Well, day one at home is over for Maia (hope I am not speaking too soon). She struggled with sleep last night, waking up around 12:30am for a while. She whimpered and cried for a bit, but went back to sleep after I talked quietly to her. Was awake again around 6am and that was it.
Her morning therapy appointments went pretty well. Physical therapy was first and Maia walked with person support for a while. The therapist tried getting her to use the big harness contraption, but Maia would not have anything to do with that. Occupational therapy is always more of a challenge and today was no exception. She doesn't show much interest in working with things. Today, the OT tried getting her to "play" the tamborine and then worked with her using a fat marker to scribble. It will be interesting to see if tomorrow is different because she only has OT. The PT is off tomorrow. We debated about seeing a substitute therapist and decided against it. Linda knows Maia so well and she is really amazing! She said that sometimes it is difficult when a different person comes in for just one day.
After therapy, we went to Mark's parents' for lunch and to see Matthew. We gave him the option of staying with Nana and Papa for one more night or coming home. He chose Nana and Papa. Shortly before we got there, Matthew decided he was not in a good mood. There were some behaviors that began before we arrived and continued a bit after. He and Mark talked for a while and that seemed to turn it around, but anticipate some difficulties as we adjust to our new norm at home.
Maia ate a small breakfast and good lunch. Thought she was doing well, but had a huge emesis later this afternoon. It just kept coming, then she began dry heaves. Mark called Dr. D who will follow up with us tomorrow morning at Maia's therapy appointment. She wasn't acting any different and managed a small dinner. As I was getting her ready for bed, she tipped off the little stool she was sitting on and bumped her head just a bit. After that, she was very emotional. Crying in a way that she has not before. Did not want to settle for bed. I did pick up the Melatonin today so she had that. Even when she fell asleep, she didn't look peaceful.
It's very hard when she can not tell us what is wrong. There are so many possibilities. She's down to the last dose reduction of her Oxycodone before we stop it, so it could be withdrawal symptoms. Shunt issues are always in the back of my mind and although I don't think that is the cause of her vomiting and irritability, I can't say that for sure. Could be that she was exhausted and overwhelmed (busy day and no nap). I'm sure she must be scared with all of these changes. We can't really tell if things here at home are familiar to her or not. And I worry about my sweet girl. I wish that I could make things better.
Maia has never especially been the cuddly type. It's always been on her terms and for short periods of time only. In the few months preceding her hospitalization, she had become more and more affectionate. Often as I was helping her get ready for bed in the evening, she would put her face close to mine and look in my eyes and hug me. Those were soooo precious moments! She had really started to seek comfort from me even when she was in trouble. Now, she makes little eye contact and does not allow me to offer her any comfort. She fights attempts at holding her close. It breaks my heart. I hope that God will heal that part of her soul and allow her to bond with us again. Please pray for that.
Before I quit, just a couple of responses to your comments:
Jacquelene - Ah... respite. We do not have any access to respite care. There has never been a need in the past. In order for her to be screened by our county, Maia would have to be covered by Medical Assistance. And though we are not even remotely financially well off, our income is enough that the parental co-pay for MA is substantial. Truly, I don't know how other families manage this issue.
Matthew's headache? He gets them every now and then. They don't seem to be migraines in nature, but may be related to his brain injury.
Tharan - We did tell Maia that she was going home. When we pulled in the driveway, there was not any indication that she recognized where she was. However, after she got into the house, Maia jabbered away for a couple of hours - which seemed to indicate that it was familiar to her.
Dannette - It's KidEssentials 1.5 for Maia. We're actually wondering if these supplements are contributing at all to her emesis. She seems to do ok with just drinking water. Will be doing some experimenting to see what works/doesn't. Thanks for letting me know about some of the resources that might help if she is on the supplements long term.
Pat - Yes, I have found myself waking up with my teeth clenched. Sure that has not helped. Pain was better yesterday and today - enough so that I thought about cancelling tomorrow's appointment. But, it get severe again tonight, so I will spend a couple of hours at the dentist tomorrow. :-(
Matthew is now wearing 4T clothes. He is still much smaller than Maia. He's small boned and fine featured. Maia is a STURDY girl - lol! She's wearing 5-6T and outweighs Matthew (who is six months older) by about eight pounds.
Please continue to lift Maia up in prayer. Thank you dear friends and family!