I read recently, on another mom’s blog, that when you have a medically complex child it’s difficult to simply answer the question, “How’s it going?”. I can totally relate to that. There is really no easy answer to that question. It all depends on the day, or rather the moment. I don’t intend to mislead anyone when I answer with a simple one word answer, but I don’t always feel up to talking about how it’s really going. Let’s be honest, not everyone wants to know how it’s going even when they ask. That’s why I blog about our life and what we are experiencing . It allows me to really tell you how it’s going. I choose to document our crazy busy life so that we can share our experiences and emotions with you, as well as have a journal of our family life for us. You choose to read it. We have been experiencing a string of good days recently in regards to Lucy’s health, the other kids health, and our life in general. When I say we are having good days, we really are, but they are not without our issues and Lucy’s too.
The kids are all back to their normal routines; school, preschool, therapies, ballet, and music. We have yet to have any medical appointments this year, a round of applause would be greatly appreciated, thank you very much! This means that we have had somewhat of a “normal” family life in our house… well, as normal as our family can be :). For the first time in a very long time we feel like we have a routine that is working for all of our kiddos. This is huge! I know as well as anyone that this can change in an instant, but for now let me marvel in the fact that we have a routine.
Lucy too has been having some pretty good days. Since starting her on the Levocarnator in mid November we have noticed a change in her overall mood, she appears to be less irritable. To give you an idea of what I mean by irritable; Lucy used to fuss, whine, whimper, cry, scream, and lay across my lap and nurse for comfort just to settle herself about 70% of the day. Now I would say that she spends less than half of the day doing this. We are not the only ones who have noticed this about Lucy, just about everyone who is close with her has commented on the little missy’s surprising new personality. Well everyone except for Sophie, she rarely has the pleasure of experiencing a less irritable Lucy. We feel that the medicine has either helped her body to feel better thus putting her in a better mood, and/or it is helping her brain to focus and feel less frazzled. We have not noticed any changes in her muscle strength since starting the carnator or improvements with her GI motility. We were hoping that the carnator might help to improve her hypotonia, but hey I’ll take a happier baby any day!
Night time in our house is a totally different story. In looking back on many of my previous posts it should come as no surprise to anyone to know that Lucy does not sleep well at night (please take note of how politely I phrased that). Because Lucy does not sleep well, means that I do not sleep well. Drew sleeps well most nights, in case you were wondering. He only wakes to put Sophie back to bed on the nights where she wakes up, he can’t really do much to help with Lucy. Not sleeping has become so routine that it is my night “normal” to wake every two, three, sometimes four hours if we are having a good night. As a veteran mom I know that all babies don’t sleep through the night when the books tell you they should. Heck Jack and Megan were terrible sleepers as babies, but you wouldn’t know it by looking at the way they sleep today. Sophie was our best sleeper as a baby, but she is not as reliable as she used to be when it comes to sleeping. She often has nights where she wakes once or twice or sometimes three times for various reasons that would make you laugh if I told you. However, Lucy is different than most babies and her sleep issues go above and beyond what we would expect for a baby her age. Waking has become so routine that I think that I have fooled myself into thinking that waking only twice in the night is considered a “good” night.
Recently, we have noticed that Lucy is having trouble handling her secretions. She is aspirating her saliva more than she did six months ago. She really struggled with this during her last bought of illness. We are getting a suction machine to try and help her with this. Like all things with Lucy some days are better than others, but as a whole her dysphasia seems to be worsening. There is concern that this could be causing her sleep disturbances. I spoke with Lucy’s pediatrician and neurologist about this and they agreed that this could very well be a reason for her waking. Her airway being floppy could restrict her airflow, thus causing her to wake. This is one theory, there are a few others that have been mentioned; but in order to even to begin to get any answers to her sleep problems, or should I say lack of sleep problems, we will need to have Lucy undergo a sleep study. Oh, I dread the very thought of having to do this with her! Lucy’s neuro is going to consult with a neuro muscular pulmonologist to see if we can discuss some options for Lucy before we move on a sleep study. In the mean time we are going to begin monitoring her pulse ox and heart rate at night to see where her oxygen saturation levels are at and if low levels correlate with her waking. I would much rather do this right now then under go a sleep study.
We take the good with the not so good everyday and make the best out of what we have. We were recently approved for forty hours of skilled nursing care for Lucy. In all honesty, I don’t know how I feel about this. Drew and I have taken care of everything for all of our kiddos, it is what we want to do! Sure I wish at times that we had an extra pair of hands to help us with things, but I’m just not sure we are ready to accept nursing care. Night care is an option, but unless they can nurse Lucy back to sleep I don’t think that I will be getting any more sleep with a night nurse in our house, not yet anyway. I am not looking for anyone’s opinion on this just yet, I just wanted to put it down in writing so that I can get it out of my mind. Just to clarify; Lucy nurses not for nutrition, but for comfort. She stops nursing or flip flops back and forth when or if she gets any breastmilk. After a year of pumping I stopped about a month ago when after a half an hour of pumping I was getting less than half an ounce total from both breasts. I was happy and sad to have it end. Happy because pumping was such a time commitment and now I have some extra time especially in the morning when time is of the essence, and sad because I knew my body could no longer supply my baby with the food we still want to give her. We have been blessed throughout the past year to have received donor milk from very generous and passionate mothers who know the benefits of breastmilk especially for a baby like Lucy.
If you have followed me to the end of this post, congratulations! I had more on my mind then I thought when I set out to write this. Thanks for all the love and support and thoughts and prayers. They mean the world to us:)