Fall 2013

Fall 2013

Wednesday, June 27, 2012

Day one at home

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!


  1. Love to you Melanie. Love to you Mark. Love to you Matthew. Love to you sweet Maia.

    Dear God, please keep this family wrapped in the warmth of your light through these difficult days. So much faith is being called for...please send healing and clarity and calm their way as the days continue to go by.

  2. You made it through your first day. Adjusting to a new norm is so difficult, and seems to happen by degrees, not big steps. I tend to want to see results so degrees of change are a challenge for me. Praying you can be encouraged by and celebrate small changes.

    If staying asleep is difficult for Maia, soft music played very quietly may be worth a try. Worked here. You mentioned at one point concerns about Maia's vision. I am praying she is seeing as well as before her illness.

    I wonder if this illness has reminded Maia of times she was ill and hospitalized in her past, as she endured that time alone. Since she cannot communicate with you right now, she may be afraid of being alone again. Does she seem to understand when you talk to her, or is she seeming to have difficulty with receptive language as well? Regardless, I pray she can understand that you are now and always will be with her. Even if she cannot understand right now, I pray she is able to understand that you are there and she does not need to be afraid.

    I pray Matthew can feel secure in your love for him. You need him now as much as he needs you. I am just plain praying for you. I understand how you are feeling. Praying for peace for you.

  3. Hi guys! Thank you so very much for keeping us updated on everything in your world and in this new chapter in your lives. I can only imagine the emotional roller-coaster you guys are going through each and every day, but I pray that you understand that we care VERY much and are continuing our prayers for y'all... ESPECIALLY for sweet Maia. Please call me if you need any help at all or just want to talk. I haven't spoke with Mark since you left the hospital, but I also am very aware that with therapies and getting adjusted, that it is best for us to just let y'all get settled into a routine before pestering you with phone calls! lol! Please also know that our prayers will not stop just because Maia is back home. I pray several times throughout the day and evening for God's healing hand and His guidance for you and Mark to get through this. That said, you KNOW you are not in this all alone, though, right? Goodnight and take care for now... I hope your sleeping and your evenings get better quickly. Love always, Brad

  4. Melanie, covering you all in prayer. I am standing and believing for answers to Maia's tummy issues. I know you will ask the right questions and take action, I am thankful you are a nurse practioner. Praying for bonding for Maia and you and Mark. Praying for Matthew this must be a huge adjustment and scary too.
    I am very sad about the no respite, I went through similar with my husband, we didn't qualify for home care or respite because he was deemed too independant, ok that was not totally true because there were so many things he could not do for himself. Would you be able to access any help from the spina bifida association or do they only do research? I will be praying for respite care for you even if it's only a couple of hours per week you need to be able to take care of the caregivers too. This is important it isn't a small thing. Praying, Praying, Praying believing for miracles. Our God is an awesome God, there is no limit to what He can do. You are a child of the King of Kings and Lord of Lords, you are not alone in this storm in your life. Hold onto faith. I am believing for good things to come. Praying for your dental appointment, you will be taking care of the caregiver in this one, I guess it could be viewed that way.
    Hugs to you all.
    Jacquelene L.


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