Fall 2013

Fall 2013

Saturday, June 30, 2012

Saturday at home

We enjoyed Maia's first Saturday back home as a pretty lazy day. Somehow, the daily "routine" seems to take a lot longer and by the time that everyone else was ready and I got in the shower, it was after 11am. We went for a walk and Maia rode her trike while I pushed. She isn't pedaling at this point, but it does exercise her legs and the therapist feels that it keeps them familiar with the process of pedaling so that hopefully, one day she will pick it up on her own.

The kids had a nap this afternoon while I worked on some thank-you cards and Mark got a hair cut. Later, Matthew and Mark did some yard work while Maia and I enjoyed the cool inside the house. A friend from church brought over dinner which Maia loved! She ate a small bowl of spaghetti and little piece of brownie with some ice cream. I was impressed!

Poor kiddo has been quite cranky today. Not quite sure what's going on. I hope that it is just her being frustrated. I really struggle with the situation. There are so many "symptoms" that are listed as signs of shunt problems. Things that I really never gave a second thought to a couple of months ago because we just chalked them up to normal toddler behavior. Now, I question everything. I don't want to overreact, but I don't want to ignore a sign of trouble either. Maia's got a new scabbed area that appeared out of nowhere on one of her incision sites. She's irritable and has been sleepy. The mood and sleepiness can sure be attributed to adjusting to home, but it still makes me uneasy. Keeping a close eye on her.

Hoping to make it to church tomorrow morning. Honestly, this is going to be hard for me. Sounds weird, I'm sure. Going back to church is going to be wonderful! I have missed it greatly and look forward to worshiping with our church family. Since Maia's illness, I have found it very difficult to see people who know the "before" Maia. It is extremely emotional and I get quite tearful. Not sure why that is, it's not that I worry about people accepting her. Perhaps because they are a reference point for the "way things used to be."

I miss my girl. Yes, we still have her with us and I am thankful for that every day. But, I miss her smile, her voice, the words that no one else understood (but I did), I miss her hugs. I miss her reading her favorite bedtime story to Matthew and me, so many things. :-(

Hard to believe that tomorrow is my last day at home before going back to work on Monday. That's going to be a tough day. I've been with Maia almost constantly for the past seven weeks. I would not have wanted to be any place else. With both adoptions, I was always ok with going back to work. This time, it's different.   Mark is a great dad and I have no concerns about leaving Maia (and Matthew) with him. But, it's not the same. I'm the mom. I've had this time to learn all those little ideosyncrasies that are new and different. My heart is going to be at home on Monday. Praying for God's strength.

That's about it for what's going on around here. I'll try to get some pictures posted tomorrow. Maia's hair is growing, soon it will be as long as it was when we brought her home. And Matthew has been so sweet with his sister. I am touched by his gentleness (most of the time) with her.

Would you pray for Matthew as well? He's having some discomfort tonight in spite of pain medication. Thanks in advance!!

Friday, June 29, 2012

Finally updating

I apologize that I dropped off the face of the earth this morning after posting Matthew's surgery start time. I am just getting back to the computer now.

Matthew's surgery went well. Less than an hour after it started, I was back in the pediatric PACU with him. He woke up from anesthesia pretty well and we were home before noon. I think Dr. K must have remembered how traumatic the huge dressing (and it's removal) were for Matthew last time. It was awful! Anyway... he just placed the sutures and used some skin glue. The down side of this is that there is much more opportunity for the sutures to be pulled out. I was given STRONG advice that Matthew needs to be quiet and limit his activity to nothing more than walking for the next two weeks. Really??? This is the child who approaches life at warp speed. Oh, my - it is going to be a challenge. But, thank you for your prayers for today's surgery. We felt them and I know that they made the difference in how things went. God was with us!

After lunch, we all crashed for the afternoon. Matthew and Mark curled up on our bed and watched tv (Mark was hoping for a nap, but Matthew must have decided that he slept enough during surgery - lol).  Maia and I cuddled up in the living room recliner. At first, she wasn't too excited about being that close to mom but soon settled down and fell asleep. She and I dozed for over two hours. Much needed rest!

Needless to say that the house was a DISASTER when my friend Jo dropped off pizza for dinner (thanks Jo!). I think that is probably one of my biggest stressors right now. When the house is out of control, it makes me frustrated. Somehow, I have to let go of that and accept that for a while, the house is going to be a disaster. Fact of life. And does it really matter? I hope that people don't judge me according to the mess of the house. I guess I shouldn't worry about it, but I do.

Maia had pizza with the rest of us this evening. I wasn't sure how she would do with it since we've been sticking with a pretty soft diet. But, she did well! Ate one square and half of a dessert stick. No vomiting today which is wonderful!!

There are times when I feel overwhelmed and so discouraged. I have to take a step back and remind myself of where we were one month ago. My blog post from May 29 talked about how Maia was not able to hold her head up by herself. Now, she's sitting on her own and walking short distances with support. One month ago, she was still having periods of agitation and anxiety. She was on heavy narcotics and anti-anxiety medications. Today, Maia is no longer taking the Ativan or Oxycodone. We will remove the last pain patch in 10 days. She's showing no signs of discomfort and her personality has returned to it's baseline cheerful nature. Yes, Maia still has periods where she gets a little upset but nothing like while she was in the PICU.  So, there is progress. And even though it is not as fast or as significant as I would like it to be, it's not about my timing. It's about God's timing and His plan. And He knows a whole lot better than I do.

Matthew's in surgery

Matthew and I are at the hospital. Surgery started at 8:23am. He did wonderfully this morning. Was a little bit apprehensive when we were pulling into the parking ramp. Told me that Maia got "owies" when she came to the hospital and seemed anxious. When I told him that Maia's "owies" were in her head and that his were going to be someplace else, he calmed down. Was cooperative with all of the pre-op process and he was moved quickly through to the OR.

Me???  I was surprised at how emotional I got when we were in the pre-op area. It was all I could do not to break down in front of Matthew. He didn't need to see me upset, but I really struggled to hold it together. Brought back all too recent memories of Maia's multiple surgeries. I pray that after this, we are done for a LONG time!

Please pray for Matthew - for everyone caring for him. That the surgery will go better than anticipated, that he will wake from anesthesia calmly and not have any nausea, that his pain will be well controlled. Pray that his recovery will be quick and uneventful so that he can get back to being the active boy that he is.

Thank you friends and family!!

Thursday, June 28, 2012

Thankful Thursday and a few prayer requests

Our first at home... so much to be thankful for!

  • Well, that tops the thankful list - Maia is home. Matthew is home from Nana and Papa's. Our family is all sleeping under the same roof tonight for the first time in over six weeks. What a wonderful feeling that is!!
  • The people who are blessing us with wonderful meals. I can not even begin to tell you how humbled Mark and I are to have friends providing for us in this way. It not only feeds us physically, but nourishes our souls as well. Tears flow freely when I think about how others have reached out to us.  This is going to be an even bigger blessing when I go back to work next week. 
  • My sweet son. I often comment about how Matthew is "ALL boy." Sometimes, I think his nickname should be "Crash" as that is often how he travels through his days. Every now and then, he shows me the caring side of his personality. This afternoon when he got home from Nana and Papa's, Matthew came into the house. Maia was sitting on the floor in the living room. Matthew walked up and gave her a soft, gentle kiss on the head. Oh my heart! What a precious, precious moment that was!!
  • I am thankful that I have been able to be off work during this time. There are no "extra" staff in our department. My colleagues have been required to cover my workload while I have been away. My supervisor has never made me feel like I need to be back at work instead of with Maia. I recognize that not everyone is fortunate enough to be in this situation and I do not take this lightly. 
  • My root canal is done. The dentist was exceptionally kind and professional. I went in feeling a little anxious, but he set me at ease immediately. He was responsive to any discomfort I had and did a wonderful job. It's good that I didn't cancel, the nerves were very inflamed (some of the worst the dentist had seen). I needed to get the issue taken care of. Mouth and tooth are a little tender, but not too bad. Will go back in a couple of weeks for the crown.

I do have a couple of specific prayer requests.
  • Tomorrow, Matthew has outpatient surgery. Although he is looking forward to being able to go to the bathroom like other boys, he does have some anxiety when going to the doctor. Please pray for peace and calm for him (and mom).
  • Maia was started on a new medication today which should help to move food through her gut better. She had a small emesis tonight again, so praying that this will be effective.
  • From a physical standpoint, Maia is doing well. We are walking her from room to room based on where we need to be and she is getting stronger. But Maia really need your prayers for her cognitive status. We're still unsure how much she understands of what we say to her. She is not making any attempts to communicate with us, although daddy and Matthew can definitely make her laugh. Mom... not so much - lol!!
Thank you as always for your ongoing prayers for us. Would love to hear what you are thankful for today!!

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!

Tuesday, June 26, 2012

We are home!

Six weeks ago today, Maia left our house via ambulance. We had no idea how sick she was at that time. Our sweet warrior girl fought for her life. You, our amazing prayer warriors, stormed heaven for Maia's life and our family! You have uplifted and sustained us in this journey that God has chosen for us. And we are so thankful for you. Today, Maia came home. Yes, life looks a lot different than it did six weeks and one day ago. But, Maia is alive and she is full of smiles as you can see. I'm not sure if she recognized the house when we pulled in the driveway. When we got in the house and set her down on the floor, Maia started jabbering and kept going for a couple of hours. She was NOT interested in a nap. Ate a decent dinner (thanks Linda - it was wonderful!) - no vomiting! Was still wound up at bedtime - it took a long time to get her calmed down enough to sleep. Probably didn't help that we were not able to get the Melatonin syrup she had been taking in the hospital. Hopefully, we can pick it up tomorrow. But no matter.... we are HOME!

Pulling in the driveway

Love that face!!

PJs on and ready for bed, but NOT sleepy!

The only thing missed tonight was Matthew. He is at Nana and Papa's. We just didn't want him to feel left out as we were trying to figure out how to accomplish those routine care needs for Maia at home. But, I have to say that my heart was sad he wasn't here. He will be home tomorrow or Thursday. I know it will be so good for Maia to have Matthew here with her. And I will be happy, too!!

I'll post more tomorrow, but please continue to pray for the transition home. I admit, I'm feeling a bit lot overwhelmed and stressed. Nothing specific, just wondering how to meet Maia's needs while managing all of the daily tasks. Thanks in advance! And Praise God for no vomiting this evening!!

Today is the day!

We are indeed going home today! A little vomiting with breakfast, but otherwise Miss Maia looks good! I can not say enough about the doctors who have cared for Maia in the rehab unit. They are the ones who have listened to and acted upon our concerns. Dr. D came in one last time just now to review things with me (even though he had already been in this morning) and to make sure we are comfortable with the transition home. There are other physicians who could learn a great deal from Dr. D and the rest of his team. Anyway... I will get pics along the way and post later this evening, but here's our girl looking happy and ready to see the place she loves best!

Monday, June 25, 2012

Home tomorrow with no slow down

Grrr.... my whole post just disappeared and now I have to start over. :-(

Yes, Miss Maia is going home tomorrow. We met with the docs this morning. Discussed the GI (vomiting concerns). They offered to ask GI specialists to see Maia before we leave, but also said that they have checked the basic things (abdominal x-ray to rule out obstruction and blood work for liver, pancreas, and kidneys). Advised that GI docs would likely tell us to "give it time."

So, we agreed with plan to get her home. If vomiting continues and we are not able to get enough fluids in for Maia to stay hydrated, I will be on the phone requesting an appointment for her to be seen. We are scheduled to see a dietician in a week and have been given some high calorie supplements to take home. On the positive side, there has been no vomiting today - WOOHOO!!

She will start outpatient therapy on Wednesday. It will be 45 minutes of OT and 45 minutes of PT three times/week. Speech therapy will start in a couple of weeks. Follow up with Neurosurgery in a few weeks (waiting for that appointment). Maia's spina bifida doctor will see her in two weeks and we will schedule an appointment with the general pediatrician within a week.

I'm looking forward to getting Maia home and in familiar surroundings. Praying that we see significant improvement once that happens.I am also anxious to have our family all together again. It's been six weeks since Mark and I have been able to cuddle up together, six weeks since Matthew has had both parents home when he went to sleep. Six weeks since his sister has been home. It's time.

And we will hit the ground running when we get home. Mark has a doctor's appointment tomorrow - routine to get prescriptions refilled. I spent this afternoon at the dentist with a painful tooth and jaw. Found out the tooth is cracked and I will need a root canal, followed by a crown. UGH! One more unanticipated expense. So... Thursday I will be going for my urgent root canal (my first). And on Friday, Matthew has outpatient surgery. How much more excitement can we fit into one week?

That's what I get for telling God a couple of months ago that life seemed quiet and uneventful. ;-) If you would pray for all of these issues, it would be so appreciated. I'm praying that God will just completely remove my tooth problem so that I can cancel Thursday's appointment. Would you join me in that prayer request??

Also, pray for a smooth transition home for all of us. I will try to remember to take pics of Maia's big day tomorrow and will update you tomorrow evening.

Thank you for all of us who have seen us through this difficult six weeks, we hope you will continue to stay in touch and follow our journey.

Guest post and meals

The following is a "guest post" by my friend Linda. She has graciously coordinated a "meal train" which will help us with some meals for the transition period home. It's very hard for Mark and I to ask for help from others, but this is something that will be a huge blessing to us - especially when I go back to work (which will be soon).

I was lucky enough to meet Melanie while she was applying to adopt this beautiful girl that she planned to name Maia. I was inspired by her commitment to fly across the globe so she could take home a little girl she had never met. Her faith was rewarded when she brought Maia home, AND fell in love with a amazing little boy in process.
While most of my time spent with Melanie has been sweating our butts off in water aerobics, I've been lucky enough to enjoy a few play dates with her and the beautiful bambinos. Watching both Maia and Matthew blossom in the presence of Mark and Melanie’s love has left me in awe. I’ve wished nothing but blessings for their family, and have enjoyed checking their blog to follow in their journey.
I first read of Maia’s illness while in Europe on vacation. I sat at my laptop and wept. When I was lucky enough to have internet access, I followed her journey while on vacation, prayed daily, and lit a candle for Maia at every church we toured. I hoped that positive energy would help lift Melanie and her family during this difficult time, but still felt like I was doing too little.
Upon our return, I sent my well wishes through emails, but still wanted to do more. I offered “to do anything” over and over and was thrilled when Melanie finally gave me the opportunity to help. Maia is coming home, and Melanie and her family will be in a chaotic transitional state for a while. During that time they will need to eat. Finally, something I could do help! Melanie provided me with the information and I simply set up the “meal train.” If you too would like to do something to help this wonderful family, please feel free to sign up and bring them a meal:
Just sign in and pick a date. Melanie, Mark, Matthew, and Maia will be happy to receive your good will (and good food!).

Sunday, June 24, 2012

One year ago

This is my second post of the evening, so if you want to get the latest update - be sure to check out my previous entry below. I felt like it was important to separate the two because this one is really about Matthew.
As most of you know, when we left the orphanage with Maia on Christmas Day 2010, I had no idea that we would be returning less than six months later. Of course, I prayed that it might happen because I knew in my heart that Matthew was our son. But, Mark hadn't come to that realization yet.  But, God spoke to him and he agreed that we needed to go back to Ukraine.

Here is part of my blog entry from one year ago today, the day we arrived back at the detsky dom.

The Moment We've Been Waiting For
There were several caregivers watching for us when we arrived and they were so excited to see Maia. One of the women cried. We met with Angelina (the orphanage director) and Olga translated the official history and medical information for Matthew. As I’ve shared before, Angelina knew we were coming for Matthew. When she found out that we had an appointment with the SDA, Matthew was told that his parents were coming to adopt him. He has been asking every day since then if this is the day that we would come.

There was a knock on the door and a caregiver peeked her head in. The door opened and there he was! He looked a little hesitant, but Mark said that as soon as they told him who we were, his face lit up. And all of a sudden, he was in my arms...

There really are no words to do justice to the emotions in my heart today. God is so good and faithful. Six months ago, He knew that we would be here today with our son. He saw my heart and answered my prayers!

Here is a picture from that day. I was so glad to have him in my arms again!! I remember thinking how small Matthew was (I had forgotten), he came home wearing 18month-2T clothes. And Maia was in 4-5T - lol!

Matthew now - what a difference a year (and a forever family) makes!

I thank God for allowing me to by this precious child's forever mommy! His smile can light up a room and the twinkle in his eyes can melt my heart. He is loved beyond compare!!

Weekend update

Maia had a pretty good weekend overall. She did vomit a VERY large amount yesterday after lunch (it was more than breakfast and lunch combined). Rehab docs asked Neurology to see Maia (which I was very thankful for). Her white blood count had remained slightly elevated and this was projectile vomiting. Lucky me was sitting right in front of her - lol!

I think her symptoms have more to do with GI problems than the shunt, but I also feel like we can't be too careful. The Neuro doc examined her and told me that she agreed with my concerns, but unless there was a "pattern" of vomiting and mental status changes, Neurosurgery would not likely do anything. I did remind her that Maia has never had the typical symptoms with her shunt problems and she agreed. But, that's as far as things went. She told me that she was going to recommend further GI evaluation which I think is reasonable (although I am really starting to get antsy to be home).  This will be discussed with the docs tomorrow.

Did well for the rest of the day. Maia got to spent time with Nana and Papa while Mark and I took Matthew to a movie. This was the first outing that he's had with both of us since Maia was hospitalized and I think he enjoyed that time together. We saw a 3D movie and I thought Matthew would enjoy it - this was his first 3D movie. Nope - he took his glasses off and told me he wanted to watch it that way. Ok... not worth the extra money for the special effects, although it was really cool.

Today, we had lunch together at the hospital. I got out for a little while this afternoon and Matthew hung out with Nana and Papa for a couple of hours. Please say a prayer for him, he went home tonight complaining of a headache - poor kiddo!

Maia ate breakfast and lunch without any problems. Took her morning and afternoon pills all right, too. Had a small emesis at dinner (nothing like yesterday), but managed her bedtime medications without any further vomiting. She's gotten IV fluids every night to make up for what she's not taking in orally.

Not sure what the plan will be. Will find out more tomorrow morning during "room rounds." This is when the whole team (therapy, nursing, dietary, docs) come to Maia's room to discuss how she's doing. As I mentioned above, I am starting to feel ready to go. I was not comfortable on Friday and am glad she was able to stay.  But since it's the beginning of the week, if we can go home with the appropriate outpatient follow up, I think it would be good. Maia will benefit from being at home, as I think we ALL will.

I'll blog tomorrow as soon as I know more. Thanking God for each of you, may He bless you in every way!!

Truth and Thanks

Shortly after Maia was admitted to the hospital, a new friend Diane (we met the day before Maia's admission when I delivered a care package to her and daughter Lily here at SMH) shared something that came to mind again overnight. There is fact and there is truth.

The fact is that Maia is here in the hospital. She has suffered a severe insult to her brain and we don't know what the long term effects of that are going to be. It is a fact that she is not going to be the same child coming home as she was.

The truth is found in God's word. He is also here with us in the hospital. He has never left our side (Deut 31:6). He knows what EVERY day of Maia's life looks like (Ps 139:16). My God is bigger than anything that can happen on this earth (Heb 1:10-12). He will sustain us as we travel this new path in our lives (Ps 62: 5-8).

And while I can not change the facts, I can remember the truths and claim them for our lives and our future.

My friends, as always I am humbled by your words of encouragement and support. I wanted to write something in response to each of your comments, but things are kind of crazy here in the room right now (Maia's jabbering away, Matthew's busy with all of the fun stuff to check out - lol) so I will try to do that later. But know that each of you touch my heart - deeply and profoundly.

Yes...I do know that Maia would likely not be alive if she had suffered this infection in Ukraine. That thought was with me last night - my initial thought had been that she may not have had this infection there. But then it occurred to me... Satan was trying to fill my mind with doubt and uncertainty.

Who knows what Maia's circumstances would be if we had not listened to God's call to be her parents? She could have endured even more severe illnesses and she would have done so without family and friends who adore her. Thinking about what she endured in the first year of my life alone breaks my heart. One of my dear friends reminded me that Maia was in the orphanage because her birth parents were not willing to accept the uncertain prognosis she was given and did not feel able to meet her medical needs. God chose Mark and I to be her parents KNOWING that we could provide everything Maia would need. Knowing that there would be times of sadness, fear, and uncertainty but the He would see us through them. That He would bring the right people and resources into our lives to support and care for her. God knew that we would love her beyond compare, He chose US to be her parents and what a wonderful privilege that is.

Saturday, June 23, 2012

So sad tonight

One year ago today, we were in Ukraine. At this very moment, we were asleep in our hotel room in Sevastopol. In a few short hours, we would be seeing Matthew for the first time as our son (more on that tomorrow).

This is a picture of Maia and I that was taken the day before - we were enjoying the water fountain at Independence Square in Kyiv before catching our evening flight to Sevastopol.

Oh, what a difference a year makes. Bringing our kiddos home was supposed to make their lives "better." Somehow, I feel as if I have failed my sweet girl. My heart is bleeding.

Friday, June 22, 2012

Same old

Well, it really is the "same old" routine around here - lol! Wake up, breakfast, therapy, rest, therapy, lunch, nap, therapy, rest, dinner, bedtime cares, bed.  Maia had a better day today. She was able to eat a little more at lunch and dinner. Small emesis this evening, but managed to get medications in with only a bit of gagging/retching, no vomiting. This is progress - sad as it may sound. She drank a total of almost 800ml today so IV fluids of 700ml are infusing overnight. Urine output remains poor, but hopefully will improve tomorrow.

Therapy went all right, also. She will continue PT and OT through the weekend. The PT plans to try having Maia walk using this fancy contraption where she is basically in a harness kind of thing that holds her up instead of having human support. She is a stinker and will lean on others if given the chance. This machine will force her to use her own strength a bit more. Discussed a special toilet chair for Maia with the OT. Initially, we didn't think it was necessary but have decided it will make things a whole lot easier in caring for those needs.

This afternoon, we (Mark, Maia, and I) were able to visit a member of our church who happens to be in the hospital as well. Although I'm sorry that he is here, it was wonderful to spend time with D and his family. Sometimes I feel a bit like we are in isolation here.

I wish I had the energy to blog more tonight, but I'm wiped out. Just wanted to update on how things are going. Will have more time tomorrow.

Not so fast!!

Well, we are not leaving today after all. Maia had very little urine output overnight in spite of the boost of IV fluids. I decided to give her breakfast before trying any meds this morning and she did drink 8 oz of nutritional supplement. Vomited up one of the new anti-seizure medications and much of the drink, but managed to keep down the other medications.

Dr. D ordered blood work which looks ok, although Maia's white blood count is up slightly. He's not too concerned, thinks it may be concentrated due to her poor fluid status. However to be safe, she's going to have daily labs over the weekend with supplemental IV fluids in addition to her oral intake. If things are not better by Monday, will likely talk with Neurosurgery and reimage her head. Also, mentioned getting "other specialties back on board." I didn't ask specifically, but I'm wondering if there will be evaluation for possible placement of a gastric tube which would allow us to administer medications and fluids at home (as well as nutrition if necessary).

Maia's also having some funky stools, so they may be checking those for C. Diff.

Sigh... while I would prefer to be at home, this is about Maia - not me. And I was not feeling particularly comfortable with leaving on a Friday with her intake being so poor. So, it's good that they are keeping a close eye on her over the weekend. Discharge now is tentatively planned for Wednesday (6/27).

I remind myself - God's in control. He's not surprised by this change of events and He wants what's best for our sweet girl. On that note, I'll leave you with a new pic. Yes, Julia - even without hair, Maia is an amazingly beautiful warrior!!

Thursday, June 21, 2012

Update and Thankful Thursday

Just going to take time for a quick post this evening before heading to bed. Maia had a fair day from a therapy standpoint. Her food/fluid intake has decreased further. Discussed with the docs, they are not sure what is going on. I wasn't at the hospital during the "room rounds," but they gave Mark some suggestions for feeding which I had already been working on (going back to pureed foods, alternating the types of foods/fluids she is getting). Although they are planning on discharging Maia tomorrow, apparently they feel it is of enough concern to give her IV fluids overnight. I feel like there is something happening physically when she eats that is creating an aversion for her. Susan - no swallowing or chewing concerns. She is tolerating jello and ice cream at times, but in general just does not want anything. She will take 4-5 bites and then just quit chewing. Fluids had been going well, but now she is fighting them also. This morning when I took the lid off her breakfast tray, Maia actually started crying. She seems to have a fair amount of gas which is being attributed to the fact that she is taking her liquids with a syringe. Medication has made little difference. Although I am eager to get home, I am concerned about the fact that 2 weeks ago, our girl was eating over 75% of her meals and drinking at least 1000cc of fluid/day (the docs minimum recommended fluid intake). I'm hoping that a plan for follow up as an outpatient will be scheduled if nothing can be done before dismissal.

There is much to be thankful for this Thursday.
  • That we are planning to go home tomorrow. It will be so good to sleep in my own bed with Maia in the house. Matthew will be spending a couple of days with my parents so we can settle in. I'm sad that he won't be home with us over the weekend, but don't want him to get lost in the shuffle as we try to figure things out and create a new "norm."
  • Blog friends who offer great comments and suggestions.
    • Danette - Thanks for the ebay recommendation. Will have to check that out!
    • Kate - Your suggestion is so appreciated, I'm not sure why it never occurred to me to contact a patient advocate or patient affairs.
    • All of you who send support to our family.
  • Blog friends who post about things that touch my heart so deeply. Adeye has a great post today responding to someone who asked if she wished her special needs kids were typical. As we face this new "norm" with Maia, I am being forced to reconsider some of my own attitudes. If you have time, I would encourage you to check out Adeye's blog.
  • God's way is perfect. Even though life doesn't always look the way that I think it should, God doesn't make mistakes. And I can choose to rely on Him for strength when I feel like I can't go on or I can choose to try to make it on my own. Easy choice... life is a lot less stressful and chaotic when I stop and focus on my Heavenly Father.
What are YOU thankful for today?

Wednesday, June 20, 2012

Counting down

Grrr... I had a post started and hit a wrong button which deleted the post. And unfortunately, my autosave draft version saved right after I deleted which left my draft with the letter "r" and that's it!!

In less than 48 hours, Miss Maia will be home from the hospital after 38 days. Unbelievable to think that we have spent over a month here. Truthfully, I have mixed emotions. I am glad that she will be in familiar surroundings (and that I will be, too) and hopefully thrive. I am discouraged that she will be returning home so "different" than before. I had hoped for a bit more progress before her discharge and I am concerned about her intake.

Maia vomited at breakfast and lunch today. Small amounts both times, but she is so "urpy" and "burpy." Docs ordered simethicone to see if this helped, but I didn't notice any difference after she received it at lunchtime. Food and fluid intake has continued to gradually decline. I did see that one of the new seizure medications can cause mouth and throat irritation. I don't see any evidence of this, but did mention it to the docs today. Although I would love it if Maia was able to eat her regular diet, if she needs to "live" on liquid nutritional supplements for now - that's certainly manageable. My bigger concern is that today she didn't maintain enough fluid intake, either. Docs are aware, no answers.

The OT and I gave Maia a bath this morning. We put bath blankets in the tub and sat her on those. She did pretty well, but definitely needed guarding to make sure that she didn't hit her head on the edge of the tub or the wall. Still trying to sort out what our best option is for bathing. Thank goodness right now, I can just wash her head with a washcloth since her hair is so short. It is growing... one of my friends said, "Well, it's almost like when you brought her home." Yep - it was awful short then, too.

While we were working on the bathing, Mark had the chance to talk with the rehab doctors. He asked about Maia's prognosis and why she was not responding as well as they had anticipated. Dr. N explained it this way. If a person has a stroke, the injury is localized to one area of their brain. The brain is able to rewire working around that area. Maia's injury was to the entire brain which makes rewiring a lot more difficult. Mark said the doctor tried to be encouraging, but conceded that she may not return to her previous level of functioning. I want to believe in miracles and claim complete victory for her (as many of you are doing), but for now... I may just have to rely on your assurances. My heart feels like it is trying to prepare me so that I am not devastated if that doesn't happen.

Maia is staring to make a few more sounds which is encouraging. She definitely has more spark and life in her eyes than she did last week. The PT said that she felt like today has been Maia's best day so far.

We had a fun visitor at lunchtime today. Dr. Jack came to see Maia. She was so excited when he came through the door. Loved seeing her smile!! This pic isn't great, but I don't have my camera cord to down load from my camera to the computer so the pic from my phone will have to suffice for now.

Maia made it through a small dinner without vomiting which was a positive. On a humerous note, I did wear a brown shirt this evening in the event that bowel care was as exciting as last night. I managed to keep my clothes clean this time, although I still should have worn gloves - lol!!

I've gotta quit for tonight, I am struggling to keep my eyes open in spite of everything I want to say. Hope you all sleep well!

Tuesday, June 19, 2012

Tuesday's happenings

It's been a busy day.  At the beginning of this hospitalization, I somehow had a few moments of thinking that I might have some leisure time on my hands - read a book, relax a bit. Silly girl!! There has been very little time to rest (or even go to the bathroom for that matter - lol!). I know the nurses are happy to help out with Maia as much as we need them to, but I have felt strongly about providing as much of her care as possible.

This morning, the individuals that I referred to in yesterday's post stopped by Maia's room for a hasty brief visit. They want Maia to have a repeat MRI in 4-5 weeks and will see her at that time. "Do [I] have any questions?" I said, "no" and they left. As soon as they walked out of the room, I broke down. The OT was in the room at that time and asked what was going on. I told her that I was so angry. That we would not be here if they had listened to us when we repeatedly said that something wasn't right. She suggested I discuss my feelings with them. And she's right, I need to. But this wasn't the time or the place to have the conversation. So when Maia goes to that next appointment, I will verbalize my anger and disappointment (yes, in a respectful manner). It's too late to change the outcome, but I need to know what they will do to prevent anything like this from happening in the future. And somehow... I will need to forgive.

Therapies today went pretty good. Maia's rental wheelchair arrived and we met with the owners of a company who will help create a wheelchair tailored to her needs. Not sure how much that is going to cost, but she does need to be safe and mobile. So while money is a concern, it can't be the only concern. As I mentioned yesterday, the days without therapy did take their toll and it will take a little time to gain back the ground she lost over the weekend.

Plan remains for discharge on Friday. It's daunting to say the least. I was looking at the various therapy goals which were set upon admission to rehab. We are so far from acheiving any of them. We're trying to get things in place for managing at home. I wonder how others do this. Any equipment we need to order will take approximately 4-5 weeks and we just have to make do during this time. Well, if we are improvising for that long - I would think that we would develop our own work arounds instead of spending money on equipment. 

On a somewhat humorous note, we are going to try a new bowel program for Maia. It involves something called a cone enema. After receiving instruction on said process this morning, I decided I was up for the challenge this evening - in spite of the nurse offering assistance. While it was successful, I will just say that this procedure will likely need a little fine turning. And note to self, do NOT (I repeat do NOT) wear a white shirt while performing this procedure. Gloves (and quite possibly a rain coat or something to protect the front of one's clothing) are highly recommended. Truly, it was one of those moments when all I could do was laugh. America's Funniest Videos might have had a winner there, if people weren't totally grossed out.

Just a couple of responses to your comments from yesterday:

Pat - You echoed the words of my heart. Thank you for understanding! And if you lived closer, I'd take you up on those offers of assistance. But your prayers mean even more!!

Jacqueline  - Thanks for understanding my anger. In some sense, I feel like my trust in health care providers has been horribly broken. The fact that these are colleagues/"peers" makes this an especially bitter pill to swallow.  Oh... BTW - I did not receive your email. Would you try again, using the link on the blog?

Jill - You're right. God HAS walked every step of this journey with us and He certainly is not going to leave now. I was reading Maia's bedtime Bible story tonight which was about Joseph. It talked about the difficult things he faced and asked "Was Joseph happy?  No, but God was with him and helped him." So it is with me. Am I happy to be in these circumstances? Nope, pretty sure NOT!! But God will be with us and He will help us.

And in keeping things in perspective, tonight I thought of my co-workers (former and current) Teresa and Crystal who have lost their sons in the past year. I'm sure that both would gladly trade places with me - just happy to have their children - even if their functional ability was different. There are others whose burdens are even greater than ours and I need to remember that when the path seems to difficult to navigate. God is walking that path with us and I need to focus on Him instead of my inability to see what tomorrow holds. He will bring beauty from ashes. Our sweet girl is here with us and I am thankful for her warrior spirit!

Monday, June 18, 2012

Back to rehab

Maia was cleared by the neurosurgeons to return to the rehab unit and after spending the morning and part of the afternoon waiting for the official order, we moved back to our old room around 2pm. Only partial therapy today because of the transfer. Unfortunately, she hasn't had PT since Saturday (VERY limited then) and I see the difference in her leg strength. OT went pretty well, Maia allowed her right hand to be moved more (she has been very resistant to any touch or manipulation of the hand). She is slowly getting used to being on her stomach and using her arms to push herself up. Mostly, she scoots herself backwards. We had a new speech therapist today and I really liked her. She took the time to sit and ask questions about Maia's previous speech... what her favorite words, sounds are, what kind of things she likes to do, what our usual home routine is. Had two of our favorite nurses today after getting back to rehab. Ashley came in and said, "I knew Maia was back because I could hear her all the way down the hall." :-)

She's having some problems with vomiting. Happened twice this afternoon. Once was shortly after taking one of her anti-seizure medications and the other was during dinner. My biggest concern is that this can be a sign of shunt malfunction. Maia has been pretty "burpy" over the past week or so. Hopefully, that's all it is. Please pray that this vomiting improves and her intake also increases. On the positive side, we did get approval to try some new foods. She's been on a pureed diet. Tried some Ge*ber graduate puffs and also a pre-packaged toddler meal to see if she could chew and tolerate the consistency. They both went well, although she was not thrilled about the taste of the meal - lol!

Thanks for your prayers - specifically for me today. I was really struggling last night and this morning. Just feeling exhausted, overwhelmed, and empty. This morning something happened over on the peds unit that had me so angry. I won't go into the details, but I'll just say that I wanted nothing more than to scream at a specific person "Come in here and look... see what the results are of you repeatedly telling us 'There's nothing to worry about. Everything is just fine.' " I know that somehow I will have to forgive all those involved, but right now I'm still very angry.

Anyway.... I digress. Although I am still not where I would like to be emotionally, I feel better than I did earlier today and I know that your prayers are the reason for this. So, thank you!

At this point, we're not sure if Maia's discharge remains scheduled for Friday or if this will change based on her most recent surgery and lack of therapy over the weekend. Hopefully, we'll know more tomorrow.

Sunday, June 17, 2012

Quiet day and a couple of specific prayer requests

Our day was fairly uneventful. Maia and I had a slow start to the morning. She slept well until about 6am and woke up uncomfortable. I asked the nurse to give her some Tylenol which helped and Maia fell asleep for a little while longer. I woke her up a little after 8am and by the time we got morning cares and breakfast done, it was after 10am. Nana and Papa came to visit. Then, Mark and Matthew arrived as well. Nana and I took the kids to the play room. This wasn't an option before because Maia was on isolation (and therefore, Matthew couldn't go either). Matthew really enjoyed playing with all the toys. And Maia had fun knocking blocks over until the occupational therapist came to work with her. It's been a couple of days since this therapist has seen Maia. She noted that her involuntary movements seem to be slightly improved and I think she's right. Neurosurgery dropped by, nothing new from their perspective.

I did finally remember to ask a question that I've wondered about for a couple of weeks. Maia was talking up until the subdural drains were removed from her head. That was the last time we heard any words. I asked Dr. K if removing the drains could have caused Maia to lose her speech. He said that he didn't think so, that it was more likely related to the changes in cerebral pressure when the drains were removed. I have to admit, I'm somewhat cynical... but, why did she suddenly lose her ability to talk when things were supposed to be getting better?

We spent the afternoon together as a family which was nice. The kids both started to get cranky (in their own ways) and I was ready for a break, too. Matthew and I came home for the evening. We had some quality time, including watching Phineas and Ferb, eating corn muffins (his favorite), and putting on Spiderman tattos. He's asleep and I'm heading for bed shortly.

I do have a couple of specific prayer requests.

  • Maia's food and fluid intake - For a girl that used to LOVE her food (remember the syrup drinking incident??), she just is not eating well. Fluids have always been a challenge and over the past couple of days, Maia is not getting enough fluid either. Please pray that this improves. Although the feeding tube (NJ) is out, I'm a little concerned that if her intake doesn't improve, docs may discuss need for a long term feeding tube. 
  • Therapy - as I posted about previously, please pray that Maia starts to make some significant progress with therapy now that the shunt has been repositioned and is hopefully working properly. 
  • Me - the adrenaline rush of the past month is wearing off and I'm feeling a bit beat up and worn down. Please pray that God will renew and refresh me for the journey ahead. 
Hope you all had a wonderful Sunday!!!

Happy Father's Day!!

I know the day is almost over, but I do want to say Happy Father's Day to all the dads out there.

Especially my dad - "Grandpa Jerry"

Mark's dad - "Papa"

And of course, my sweet hubby - a.k.a. "daddy"

Saturday, June 16, 2012

Saturday update

I'm sorry I didn't get things updated this morning. I didn't sleep well last night and as soon as Mark arrived, I went home for a short nap.

Maia did well overnight. She was uncomfortable around 2am, but settled down with some oral pain medication. Woke up at about 6am, quiet and pretty content. Surgeons stopped in to see how she was doing. They did say that Maia's spinal fluid appeared clear which is how it's supposed to look. Before surgery, we had asked if they planned to send cultures of the fluid to make sure that there was no smoldering infection and were told yes. Haven't heard anything about results from that yet.

I have to admit, I was hoping for some miraculous improvement with last night's surgery, but for the most part Maia remains the same. I think she does have a bit more life in those beautiful gray eyes than she did a couple of days ago. She didn't eat breakfast or lunch, although I was able to get some nutritional supplement in her.

When I came back from my nap this afternoon, I got Maia up in a wheelchair and took her to the kids' playroom. She enjoyed knocking some blocks over. It's still hard to tell if her movements are purposeful or not, but either way - she giggled.

For some reason, Maia has been living with her fingers in her mouth today. She ate a decent dinner, but stuck two fingers in her mouth tonight and gagged - throwing up much of her supplement. UGH! The little white slippers came back out and onto her hands.

Matthew had a wonderful time at Grandpa Jerry and Grandmama's house. He got to play with Suki and burn off a lot of energy. It was so fun to talk to him tonight and hear about his visit.

Please pray that Maia shows improvement now that her shunt has been repositioned and that we begin to see bits and pieces of our girl back. And also pray for Matthew. We are reassuring him that he is every bit as important as Maia and we love him just as much!!

Back from recovery

Maia is out of recovery and has returned to a new room on the pediatric unit. She could not remain in the rehab unit post-operatively. If all goes well, she will likely return there on Monday.

I just finished reviewing meds with one of the nurses. Maia has been on a taper of her scheduled Oxycodone and of course, now the medication is written as needed. They are working on getting this clarified, I want to make sure that she doesn't miss any of these doses - doesn't need withdrawal symptoms on top of everything else.

So far, she's been resting quietly. Did smile when daddy sang to her. I'm going to try to get a little sleep as soon as the nurse is done with her assessment.

I feel like a broken record, but thank you for your ongoing prayers for our sweet girl. It makes this journey a bit easier knowing that so many people are lifting her up! I'll update more in the morning.

Friday, June 15, 2012

Sweet girl!!

maia is done, all is well, more coming soon


Surgery started

We received a call that surgery started at 9:20pm. How ironic that exactly one month ago tonight, we were sitting here with Maia in surgery to remove her shunt and place the external drain. Never did I imagine that we would still be in the hospital a month later with Maia having urgent surgery. Poor kid, four surgeries in one month. A total of seven in the 18 months since she has been home.

How I love that little girl!  Thank you for your ongoing prayers for our sweet Maia!

Surgery confirmed

The neurosurgeon was just in. Maia will be going to the OR within the hour. Will update as we know more.

Still waiting

Havent heard anything more feom surgeon. apparently, there is discussion about waiting until tomorrow. will update as soon as we know.

Prayer warriors, we need you!!!

More prayers needed. Head CT this morning shows Maia's ventricles are enlarged to previous levels and shunt is malfunctioning and likely displaced. We're waiting for neurosurgery to come right now.

Why do children suffer?

I don't have the answer to that question, but was thinking about it this morning. A couple of friends have commented lately about how difficult it is to see children suffer. How difficult it is to reconcile what they are going through...cancer, genetic disorders, birth defects, so many things.

Anyway... here's my perspective. It may not be original, I haven't looked to see if anyone out there has made similar comments. So if I'm "copying" someone else, I apologize. It is not intentional. I believe in spiritual warfare. I believe that Satan wants nothing more than to attack us, destroy our faith in God, break us in every way possible. Is there any better way to accomplish this than through children?? They are innocent, they've done nothing to deserve pain and suffering. Even the hardest heart is touched by a child who sick.

When Satan targets a child, he targets more than just the individual. It involves family, friends, church, school, communities. People who don't even know the child can be called to action, advocacy, outreach, prayer. These situations unite and tear apart. They cause people to question their faith, their believe in a kind and loving Father God. And when this happens, Satan wins.

God doesn't guarantee an easy life. He doesn't promise answers to the pain and suffering, the injustice, the trials in this world. But what He does promise is that He will be with us during those difficult times. He asks us to believe that He can take the most horrific situation and bring about beauty because of it. And when we continue to trust and place our faith in God, when we continue to praise Him in the midst of the storm, Satan no longer has the ability to shake our foundation and he loses all power.

So, while I don't have the answer to why children suffer. I do know that I have a God who understands and stands by us at our darkest moments. He is constant. And He will sustain us when we can't comprehend the difficulties in life. That's just my perspective this morning - for what it's worth!!

Thursday, June 14, 2012

Thursday update

Since it is Thursday, I want to just start out by pausing for a few moments to be thankful. God has not forgotten us in spite of this difficult journey that we have travelled over the past month. He has blessed us with wonderful support from so many sources.
  • Our church family has humbled us with their warm, generous spirit and we continue to praise God for leading us to this special group of people. 
  • Friends (including all of our blog readers) and family offer support and encouragement which sustain us when moments are tough.
  • Prayers for our sweet girl which are coming from all over the world! It means so much to know that she is being held up before our Heavenly Father with petitions for her healing.
  • Most importantly, we are thankful that Maia has survived this horrible insult to her body. She is strong physically and such a determined little girl. God has plans for her and His strength will be made perfect in our weaknesses!
Maia had a pretty good night's sleep last night. This morning's therapy sessions went well and she was in a cheerful mood. An abdominal x-ray was obtained to make sure that she does not have a bowel obstruction. Thankfully, this showed lots of stool but nothing concerning. So, we will need to be a little more aggressive with her bowel regimen, but that's manageable.

Still not eating a whole lot, although there was slight improvement from yesterday. She vomited again tonight at dinner, but did not appear to be in any distress at that time. In fact, she giggled right afterwards. Still trying to sort out the cause. Don't think it's because we're forcing too much food because she's eating so much less than she was last week.

This morning, the doctor mentioned the possibility that Maia may have cortical blindness. This is a condition in which the brain is not able to receive or analyze signals from the visual pathways. Although Maia does pay attention to the tv (especially Super Why), she does not consistently track objects, people, etc. The therapists are having difficulty getting her to focus and follow as well. I have not had the chance to learn much about this other than that it is likely due to the trauma to Maia's brain. This would be evaluated by neuro-ophthalmologists. From what little I have learned, treatment options are quite limited.

We're starting to think about what we are going to need to have Maia at home. This is definitely going to be a learning experience for us. She's never needed any adaptive equipment, but we will not be able to care for her without it. Things like a wheelchair, chair or support for the bathtub, chair or support for eating, etc. It's a little overwhelming to consider.

It's getting late and I need to head for bed. One other thing I am thankful for today is spending time with Matthew. He and I spent the afternoon together and we ended the evening having pizza, watching a movie in Maia's room.

Oh... I am also thankful for my hubby. I can't imagine going through this with anyone else!

What are you thankful for today?

One more thing... thanks to my wonderful friend Debbie who blogged about Maia today. You can read her post here.

Wednesday, June 13, 2012

Ups and downs

First, I want to say thank you to all who have sent words of encouragement and prayers following my post last night. I know that they have helped. I won't lie... I'm still struggling, but the tears have eased a bit.

Today has been a day of ups and downs - or perhaps downs and ups. Maia did all right at breakfast this morning, not great but managed to get a bottle of Boost in and ate a few bites of food. Occupational therapy went well and she is nearly able to push herself up into a sitting position when lying on her side. Way to go, sweet girl!!

Mark came during her morning break and then headed to physical therapy with her. I had to get the keys from him as I was planning to head home for a few hours. When I got back to Maia's room to grab my things, the doctors came in and shut the door. I knew what they were going to say, I've felt it in my gut for several days now. Maia is not making much progress. Last week, they had extended her discharge date to June 29, optimistic that she would improve greatly with the therapy regimen. While there have been gains, they have not been enough to justify the longer rehab stay. The team will work with us to determine what adaptive equipment is needed at home and help us obtain it. Maia will be discharged next week. She will continue outpatient therapy.

I wasn't surprised, but it still was difficult to hear. I admit... I want MY plan for Maia's life, I want to MY miracle for her. In my heart, I understand that God knows better than I do. However, I wish I had a glimpse of His plan. I can call to mind so many Bible verses meant to comfort, but I'm still struggling to find peace at the moment.

Following the discussion with the doctors, I went home and took a nap. It did feel good to crawl into my own bed and shed a few tears there. Came back to the hospital and found Mark and Maia out in the courtyard. It was a beautiful day and Maia was on her trike with Mark pushing her around. My friend Jeanne stopped in for a visit, then Mark's parents arrived with Matthew (he spent last night there). Mark's friend Brad dropped by a little later. Matthew loved having lots of attention! And Maia loved laughing at Matthew - lol!

Maia vomited after dinner tonight while taking her medication. The nurse was concerned about her feeding tube being "out" further than it should be, so the doctor agreed to pull it. This means she has to take all of her medication orally. After it came out, she had some more medications and vomited again. Please pray that things settle down and there are no further issues with that.

She's asleep at the moment and hopefully, will remain there until her 1:30am medications. Her mood was pretty good today so that's a positive. There has been some elevation in her liver function tests so these will be rechecked on Friday. If they are ok, the PICC line will be removed before the weekend.

So, that's the latest. Again, thank you for your kind words and prayers. They truly touched my heart!! 
Jacqueline, Would you leave me your email address? I'd love to drop you a "note."

Tuesday, June 12, 2012

Four weeks

That's how long we have been here at the hospital. It feels surreal. I remember similar feelings after Bob died, wishing that I would wake up and find out that this has been just a dream, a bad one. But here we are...

I will preface tonight's post by saying that my mood is suffering today. I debated about whether to blog or not because I don't want to be a downer. However, this is reality and this is where I'm at. So if you are reading this hoping for inspiration, I admit - you  may not find it tonight.

Today's had some difficult moments. Maia has had periods of agitation/screaming, not sure if they are pain, anxiety, frustration, or what. It's hard when she can't tell us what's wrong. Her food intake has slowly declined since Saturday. This morning, Maia would not tolerate any food in her mouth. I could barely get her to take a bit of the nutritional supplement and the nurse had to give her medications through her feeding tube. It's a significant change from last Friday when she got 1800 calories in!!! Mark barely got some apple juice in at lunch time. She won't let us get a good look in her mouth but when I can peek, I don't see anything out of the ordinary.

The doctors came in and didn't seem to think anything was concerning. I don't want to be one of those difficult parents or someone who overreacts. I also know what it's like to be on the receiving end of a difficult patient and/or family so I try to keep that in mind when I communicate with the providers. On the other hand, Maia did not show any of the typical symptoms associated with shunt problems even when she was fighting this horrible infection. She had the low grade temp for months and every time we expressed concern about it, we were told it was nothing to worry about. I explained that to the doctors this morning, saying that I wanted to be sure that nothing was missed because "there are no concerning symptoms." They seem to think that this may be related to her medication taper. I'm frustrated because I just don't know. I want to trust that the doctors are right, but given the events of the past couple months... I struggle to trust their lack of concern.

In spite of the agitation, Maia did ok with therapy. The therapists are starting to talk about adaptive equipment for home which is also discouraging because it feels like they are scaling back their goals. The original goal was to have her near baseline before we left the hospital and given where we are at today, this seems unlikely. I'm a bit overwhelmed when I consider that.

I spent a little time with Matthew this morning which was nice. We had a picnic at one of the parks and then played for a while before I took him to Nana and Papa's to spend the night. I ran a couple of errands - picking up a few clothes for Maia and buying cat litter. Felt good to do "usual" things for a bit.

Tonight, Mark and I gave Maia a shower. This did not go well. She's had two baths and today's shower since getting to rehab. For a girl who always loved baths, she has done a complete 180 and hates them now. Since she hasn't liked the baths, we thought we'd try a shower. She screamed (yes, literally screamed) for the entire time. On the positive side, she did eat a bit better for dinner and I was able to get an adequate amount of fluid in. Please pray that this improves tomorrow.

I know I'm over tired and that certainly doesn't help my mood so I am going to quit for the night. Thank you to all who read blog and uplift us in prayer. Jacqueline, Pat, and Jane - you guys ROCK! I love reading your comments!!! Thank you so much for all of you who provide ongoing support and encouragement, it makes a difference. I know God is with us in the midst of this storm and He will see us through.

Monday, June 11, 2012

Quick note

It's late and I'm exhausted so just taking the time for a quick update. I spent last night at home with Matthew and as usual, I kept putting off going to bed until much too late. Still was up and going before 6am. Someday, I will learn. Hmmm.... and I complain about Maia not sleeping? As she would say, "Silly mommy!"

Matthew hung out with nana and papa for a while this morning so Mark could run home and sleep for a few hours. Nana came to the hospital to spend the afternoon with Maia. Matthew spent the afternoon with some friends from church (such a huge blessing to us and so wonderful for him to have time with other kids). Mark and I planned to just take a nap, but instead ran errands and spent a little time together. Gosh, I miss my hubby!!

Back at the hospital now. Maia had a pretty good morning. OT went fair, PT was pretty good. She "rode" her trike around the unit both AM and PM sessions. Starting to push on pedals a bit which is progress. The PT asked me about scheduling an appointment for Maia to be evaluated by a company that makes adaptive mobility devices. A wheel chair would not provide adequate upper body support given her significant ataxia. And a regular stroller just is too small for her. It makes me sad that we will need to use something like this, but wishing it wasn't so won't change anything. If it will benefit Maia, then of course we will proceed. I'm waiting to hear when the appointment is scheduled for. She will be evaluated her at the hospital.

Fluid intake is going well, although eating was not great tonight. She would take a bite, but just let the food sit in her mouth. This has been a gradual change over the past few days, so I'm concerned about it. Will be mentioning to the speech therapist tomorrow. The feeding tube won't come out if Maia's intake isn't what it needs to be. She is able to take all of her medications orally, though which is wonderful!   Right now, she continues to receive meds every 2 hours, so we aren't waking her during the night just using the tube.  From a speech standpoint, we aren't seeing huge progress, but Maia is starting to make some different sounds. Nana and Papa are pretty sure they heard a "bye" this afternoon, too.

That's the short version. She's fighting sleep again tonight. For those who have asked, yes.. I also think she may have some fear of sleeping since she's awakened so many times with more hurts and tubes. And it is something she can control (really, the only thing at this point).

Now, I'm going to be in control of my sleep - lol!! More tomorrow.

Sunday, June 10, 2012

Why vs Why Me?

During times of crisis, the common question seems to be "why?" Sometimes that is followed by "me," as in "Why me?" I was talking with a friend the other day who told me that when her son was hospitalized and underwent surgery, she did a lot of asking that question "why me?" Our conversation really made me stop and think.

When my first husband died, I don't ever remember saying "why me?" In fact, I specifically remember thinking "Well, I am certainly no better than anyone else that I should be spared from something like this." And as painful as it was, I also remember thinking that I would never have wished those circumstances on my worst enemy. However, I did spend many moments crying out to God, begging Him to take that yoke from me and asking "Why?" Although I never received a direct answer to my question, eventually I was able to claim Jeremiah 29:11 in response to the question. "For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future." And as life began to form a new "normal," I started to see that my Heavenly Father did indeed have plans for me. He created beauty from ashes and truly did give me hope and a future. My life with Mark and our two precious kiddos are wonderful blessings that came out of heartbreak.

I admit that Maia's illness has challenged that mind set. There have been moments when I have wondered "Why her, God? Why my sweet girl? She has done nothing to deserve all of the pain that she has endured in her short life. She shouldn't have to suffer like this." And in being painfully honest with myself, I have wondered why He has chosen Mark and I to walk this path with a child. Recently, I heard someone quote a line from a country song that went something like "If you want to make God laugh, tell Him what YOU want." I laughed when I heard it because I think there is truth in the statement. Who am I to tell God what is best for me? As I was typing this, I just had another "a-ha" moment. We have had (and continue to have) a lot of conversations in our house about who is in charge. That the kids do not get to make the rules, they are not in charge, and they do not tell mommy and daddy what to do. Isn't that a little bit like we try to do. We try to tell God what the rules are, that we are in charge, and what we want. The truth is that HE is the creator of our lives and our journeys, that HE is in charge, and I am in no position to tell HIM what to do. Oh.. the things we learn from our kids.

The bottom line is that I may never know why Maia (and our family/friends) have been chosen for this journey. At least not this side of heaven. Of course, it's not what anyone would want for their child. But, God spoke very clearly to me as I was sitting in the emergency room with Maia while doctors worked to stop her seizures. I don't know if you remember, but He said to me, "I have chosen a different journey for Maia. And with that in mind, I can continue to claim the bible verse I noted above. God has plans for Maia, just like he Has plans for each one of us - if we choose to allow Him to direct our lives. He will give her hope and a future. Another passage that God led me to yesterday was 1 Peter 4: 12-13, "Beloved, do not be surprised at the fiery trial when it comes upon you to test you, as though something strange were happening to you. But rejoice insofar as you share Christ’s sufferings, that you may also rejoice and be glad when his glory is revealed." I do pray that God's glory will be revealed through Maia's illness and recovery. He is the reason that we are able to fight this battle and I will give thanks to Him in all things, even when I don't understand. I will give thanks that God felt that we were worthy to be Maia's parents, knowing that these circumstances were going to be part of her life. I will also give thanks that God felt we were worthy to be Matthew's parents, knowing that he would experience his own turmoil and stress because of Maia's illness. I will give thanks that God is big enough to handle my tears and He is big enough to handle my "Why?" As far as the "Why me?, well... the better question is "Why NOT me?"

Saturday, June 9, 2012

Two years ago

This is the letter that I sent to our adoption agency two years ago today. Reading the part about Maia being perfect in God's eyes brought me to tears this morning. He chose her to be our child, knowing that everything that has happened over the past month would be part of our journey. I am also reminded that even though I want to know all the details so that I can anticipate every possibility, it is better that God only shows us a small peice of the picture at a time. If we saw it in it's entirety, can you imagine how overwhelmed we would feel?

June 9, 2010

Victoria, Amanda, and Carla

We are writing this email to formally communicate our desire to commit to Anastasia, GEE170807 who is one of the waiting children on the About A Child website. We will be completing our home study with Summit Adoption Home Studies in St. Paul, MN.

We appreciate that Anastasia will have some special needs related to spina bifida and strabismus. We also understand that because of the orphanage environment, there may be other delays or conditions that are currently unknown. Although she may not be “perfect” by the world’s standards, Anastasia is perfect in God’s eyes and we believe that He has chosen her as the “perfect” child for our family. Melanie has worked as a nurse for 16 years and just completed training to be a nurse practitioner so we believe that we have the capability to support any medical needs that Anastasia may have. Additionally, Melanie works at Mayo Clinic Rochester – so Anastasia will have comprehensive medical insurance as well as access to a well-respected spina bifida clinic.

While her medical needs are important, we also feel that we will be able to offer Anastasia a loving home surrounded by family and friends who are supportive of our adoption plans. She is a beautiful little girl who has touched our hearts and we can’t wait to bring her home.

Also, just to “put in writing” even though it is also in the service agreement, we do understand that there are circumstances out of AAC’s control which could result in our inability to adopt Anastasia. While we hope that that does not happen, we do recognize that this is a possibility.

Thank you for consideration of our request to formally commit to adopting Anastasia. If you have any questions or concerns, please don’t hesitate to contact us. We look forward to hearing from you and getting the process started!!

Mark and Melanie Hansen

Thoughts and another day

I guess I should have titled today's post "Another day and thoughts" since I am going to start out with the day. You'll just have to bear with me. :-)

Miss Maia was up early this morning - 4am to be exact. She fell back asleep around 7am and did manage to get another hour of shut-eye before I had to wake her up for breakfast and get her ready for therapy. The first OT session went pretty well. Plan was for a nap between OT and PT, but that didn't happen so PT didn't go quite so well. After lunch, Maia had more nap time scheduled but it took her long enough to eat lunch that there was no time for nap. Needless to say that her afternoon OT and PT were not too successful. Please pray that we can find a routine to allow for enough rest time so that Maia tolerates and is cooperative with the therapies. If she is not able to work with them for enough time daily and does not make progress, insurance will no longer cover her inpatient rehabilitation and she will be discharged.

She had a busy, social afternoon. No nap, Maia just would not allow herself to fall asleep. I think this is the one area that she can control and boy, does she exercise that right - lol!!  Nana and Papa visited, then some friends also came to visit. By the time dinner was over with, Maia was wiped out. She fell asleep around 7:30pm. I'm praying that she sleeps through the night.

Matthew and I went to the movies this morning. One of the local theaters offers a free second run movie on Saturday mornings. Of course by the time you buy popcorn, etc., it's still not a cheap outing but we had fun and it was good together time. There was some type of promotional display in the lobby. Think we may have a future rock star on our hands. ;-)

So many thoughts run through my head lately that I want to share here. Unfortunately, most of them truly RUN through my head and by the time I can actually blog, they are long gone. But, I want to tell you how much it means to us to read your comments and feel your ongoing prayers and support for not only Miss Maia, but our entire family. I can only imagine what it would be like if we did not have this amazing group of people uplifting us.

I have to admit that the novelty of an extended hospital stay is wearing off - lol! There are so many things that I used to take for granted... cooking a meal, taking a decent shower, going grocery shopping, devotional time in the living room recliner before the kids wake up, seeing friends, going to church, all of our typical daily activities.  And still... it's difficult for me to leave the hospital for more than a few hours. There is a little girl who pulls at me (even though she doesn't know it) as soon as I walk out the door.  But, there is also a little "big (his word)" boy who pulls at my heart as well. And an even bigger boy who I miss spending time with, too. Somehow, sharing dinner at the hospital and the peck on the cheek as we are trading places with the kids leaves me yearning for a bit more normalcy. I pray that we are on the downhill side of the journey towards that.

There are definitely glimpses of our sweet girl that show through. Several months ago, Mark was teasing the kids and calling them "poopy (is that how you spell it?) heads." They thought this was hysterically funny. I asked him to come up with different nicknames because I was worried that they might call kids that at school. I didn't want teachers calling to tell us our kids were being rude to others. Anyway, today I called Maia a "poopyhead." She giggled and giggled. Matthew can make her laugh like no one else with some of his silliness. And you should have seen the smile on her face when Nana and Papa came to visit today. She knows who the important people in her world are.

Today, we had another step in the right direction. Her third nasal swab was negative so she is no longer on isolation - YAY! Her blood pressure has been kind of wacky yesterday and today with diastolic (bottom number) pretty low. Her heart rate has also been high. No one seems too concerned at this point so I am not stressing much. But given how "normal" she was up until a few hours before this whole thing started, I am hypervigilant about anything out of the ordinary. Please pray that all her vital signs return to baseline and remain stable.

We are maintaining and we will get through this. God is bigger than anything we are going through and He reminds me of that as well. Again, thank you friends for your part in our journey!!

Friday, June 8, 2012


Today is day 23 here at the hospital. In some ways, it seems like it's been much longer and in other ways, not so long. Maia is still adjusting to the rehab unit routine. Her sleep patterns are a little out of whack and she's having to work pretty hard. 90 minutes each of physical and occupational therapy daily with 30 minutes of speech.

Yesterday, Maia did well with physical therapy. She seemed to struggle more with occupational therapy. Speech therapy is pretty unremarkable at present. I asked the OT and ST if my perception was correct and they both did agree. These are harder areas for Maia and she is more motivated to participate in things she does well in. I think she may be fighting a little bug or something because she took 3 naps yesterday.

Today's therapy didn't go well at all. I wasn't here for the morning sessions, but when I woke Maia up from her afternoon nap, she was NOT a happy kiddo. Screaming and agitated. Her right ear and the side of her head seemed to be really bothering her. She was not interested in working with PT at all. The doctor did come in to see her. Looked at her ear and said that it appeared a little red so he was going to order some numbing drops, but he couldn't get a clear visual. Maia eventually calmed down with some pain medication, but was not herself for a couple of hours. She did eventually cheer up, although we had another meltdown when the nurse had to do site care on her PICC line and again about 10 minutes after she fell asleep this evening. Her Ativan and Oxycodone continue to be tapered so this may play into how she's feeling as well.

On the positive side, the first two of her nasal swabs have come back negative so if the third one comes back negative, Maia will be able to come off the isolation precautions. Although it doesn't have a huge impact on us, it will make things easier for the nurses. She's eating well also. We've got to work on her fluid intake. The doctors want a minimum of 1000ml/day for several days before they are willing to remove the feeding tube. Maia wasn't drinking that much at home before so this will be a challenge. However, we really don't want to have to go home with a feeding tube if it's not necessary.

It was nice to spend some time with Matthew last night and this morning. It's hard feeling torn between the two kiddos. And I miss my hubby, too. Will be glad when we are all home together again.

I know this is a pretty boring post... it's late and my mind is kind of fuzzy so I'm going to quit for the night. This weekend should be quieter so I can share a little more of my heart here (hopefully).  I'll leave you with a pic of the sleeping princess.

Thursday, June 7, 2012

Thankful Thursday

The day is almost over. I had big plans for a great Thankful Thursday post this morning, but the day got away from me before I could get it done. So instead, I will leave you with just a couple of photos showing what I am most thankful for today.

This is an old picture, but it's the only one of Mark that I have easy access to. Love my hubby and that sweet moment captured!!

Matthew and I spent some time together today which was so nice. I'm happy to be home with him tonight. His face melts my heart, this precious kiddo that I begged God to let us bring home!

Maia taking some steps with the walker. She was so proud of herself!!

More complete update tomorrow, but that's all for today. Oh, except that I'm thankful to be sleeping in my comfy bed!!