Here we are at the 6 month mark! I can hardly believe it!
About a month ago, Ana had an NG tube placed because we were having difficulties with feeding. Since then her weight has held steady, and she has been gloriously hydrated ;-)
Her eating skills have continued to deteriorate, and we are looking forward to getting started with a feeding therapist. Hopefully that will help us to make some headway.
Entirely unrelated to the feeding issues we had to push her hip surgery out to next month, toward the end of August. Her home sleep monitoring revealed some pretty nasty dips in blood oxygen levels (due to obstructive apnea, most likely), so she needs to do a full-on hospital sleep study before pulmonology will clear her for surgery. Her sleep study is scheduled for the end of July, giving us plenty of time to get ready for surgery afterward.
Planning around a major surgery is weird; everything has to be placed in either the "before surgery" or "after surgery" category. Ana's pediatrician and I agreed that beginning serious therapy before the surgery probably wouldn't accomplish much that wouldn't be lost during surgery recovery. Hopefully we can get some good stuff started this fall.
I just need to figure out how to keep Ana occupied in the meantime...
She has been very fussy and upset recently. It is hard to know if it is boredom, or pain, or emotional issues. She is happiest if I am holding her, and gets sad/lonely/uncomfortable/bored (?) if she sits in her chair for more than a couple of minutes. It is a little difficult to figure out how to best plan her time while allowing for the chores that I need to do, not to mention the time I want to spend cuddling the little boys. I am hoping that eventually some good therapy and possibly school will help her to have good things to do and alleviate what I perceive to be boredom.
As far as her relationship with Took and Porgies goes, it has been fun to watch that blossom. She is obviously delighted with her brothers, and they obviously love her very much and are so excited to do things that make her happy.
We are so thankful that God has brought Ana into our family and are excited to see how He will work in all of our lives. Thanks for your prayers!
Ana sure seems to have a lot going on right now. I'm sorry that it's so hard to figure out what is making her fussy and upset, plus losing her eating skills. Something mouth-related comes to mind. A sore tooth or other dental issue?
ReplyDeleteOn the other hand, you do need to be able to get things done. As a mom with kids with special needs, too, I've found it helpful to remember that they need to develop their skill to be content alone, as well as attach. Being alone in a loving family is different than being neglected in a crib all day, but it's hard as a mom not to want to be there when our kids cry and need us. I don't know how much Ana comprehends, but it might be time to have a little talk with her about how mama needs to get her word done and it's Ana's time to play by herself. I'm super tired while typing this, I hope it makes sense...
Thanks for this: " Being alone in a loving family is different than being neglected in a crib all day,"
DeleteHer history is one of extreme neglect and I do struggle with guilt when I leave her "alone" (she's not really even alone, she can see all of us and the activity that goes on around her).
I don't really know her comprehension either, but I usually do tell her what I am going to do and bring her along to watch.
Thanks for the update. Can you leave her on the ground or does she always have to be upright ? I would believe she is like our children.. they know how to get our attention and want mum all to their service, rapped around her little finger...
ReplyDeleteYes you might have to have a talk with her ! It is efficient with babies, it could be with her too. ;)
She's beautiful and such a difference can be seen already! We will be praying as you prepare for her surgery.
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