Fall 2013

Fall 2013

Thursday, August 30, 2012

Sleep study results and Thankful Thursday

I almost forgot what day it is, but can't overlook reasons to be thankful.

  • First, Maia's sleep study results showed very mild sleep apnea and only when she lies in her back. It isn't uncommon in people with neurological conditions like spina bifida to have sleep apnea. They tend to have lower muscle tone in general and this affects their throat and airway muscles. So when Maia lies on her back, her airway collapses a bit. Again, it is very mild case and the only recommendation is that Maia sleep on her side. She does have some narrowing of her nasal passages which Dr. K thinks may be allergies. He didn't feel any testing is necessary now, but did prescribe a nasal steroid spray to use at bedtime. I was so very impressed with Dr. K. He was very thorough, asking about Maia's neurological progress and making some suggestions for school as well. He was also very kind and acknowledged how difficult it must be for Maia to have lost so much function, but did provide a bit of encouragement. He said that Maia's new baseline may not actually be evident until two years after her "injury." Dr. K also reviewed CT and MRI results and confirmed that the most recent scans show that Maia's ventricles are not any larger which is reassuring.
  • Today, I am thankful for the gift of adoption. Although both kids have their "moments," I would not trade them for anything. God blessed us when He brought them into our lives.
  • I am thankful for the gift of Grandma Hansen. I have commented about this before, but I was thrilled that both of Mark's grandmothers were alive when we got married. Grandparents are truly a special blessing.
  • A tolerant husband. My sweet hubby has much patience with me and I love him dearly.
  • Again... Central air conditioning. I am so ready for these 90+ degree days to come to an end. But, at least our house is cool!
What tops your list?

Wednesday, August 29, 2012

We survived

Maia had a pretty typical night for her sleep study. She was so exhausted by the time I got her tucked in that she fell asleep within about 10 minutes. She slept quietly until about midnight then the tech came in to turn her on her back. Maia does not sleep on her back, never has. So, she fussed a little but I did get her settled down. She had to be repositioned every hour or so through the night. The tech who came in commented that I was a "light sleeper." Hmmm... It would be different if Maia was a teenager or even could communicate in some way. Anyway, I digress. The techs came in around 6am to take the leads off. This did go better than last night, although Maia was still not a happy camper. We were home by 7:30 and both of us were pretty cranky. Our results appointment was changed from today to tomorrow which is unfortunate because Maia and I will miss Grandma's funeral. I asked about rescheduling, but the next available appt wasn't for 3 weeks. Mark and I decided that this had to take priority.
Had a lazy afternoon and evening which was nice. Looking forward to a quiet day tomorrow as well. Mark and Matthew will travel to Wisconsin for Grandma's funeral.

Tuesday, August 28, 2012


That would be both Miss Maia and I. Matthew had a tough day so I was wiped out emotionally by dinner time. Maia is having her sleep study tonight. Doctors want to make sure she isn't having a different type of seizure overnight or that she doesn't have sleep apnea which is causing a fair amount of anxiety when she lies flat.
One and a half hours to get all the leads and monitors on, of which Maia cried for about 88 of those 90 minutes. I had to hold her as she screamed and fought the techs who were placing the electrodes. I seriously considered saying "forget it." this child has been through so much in the past few months. It was traumatic for both of us. She is now sleeping quietly and did manage to smile at me with that precious face for a few moments before dozing off. I hope that one day she will understand that my heart aches for what she has experienced.
On a positive note, we did have the joy of visiting with our friends who are just home from Sevastopol with their little guy and oh my, he is absolutely adorable!
Also, thanks for your thoughts and prayers. At 101, we certainly did not expect Grandma to be with us forever. And she is in a much better place. But, there is still a bit of sadness.

Monday, August 27, 2012

A life well lived

Grandma passed away this evening. She was a beautiful, funny, kind woman who will be greatly missed! 
One day, we will see her again...

Saturday, August 25, 2012

Ahhhh.... Life

It's never quiet! I was eagerly waiting for the end of the day yesterday because vacation would officially start. Or would it? Nope. I couldn't get everything wrapped up so went back to work this morning for a while. Brought Maia with me. Mark took Matthew to the air park with him (tomorrow's the Fly-In). Maia was very patient (not that she had much of a choice). By the time I finished, I noticed she was flushed and warm, running a low grade temp. She's been irritable and lethargic lately, too. Mark and I decided that a trip to the ED was in order. Don't want to take any chances. So, that's where Maia and I spent six hours today. X- rays of the head and stomach, urine and blood tests, head CT, she had it all. Thankfully, everything looks ok. Her ventricles are slightly smaller now when compared to the last CT (before most recent shunt revision), so that is good.
Came home in time to get dinner ready. Matthew came home with a headache which we chalked up to being outside all day with dad. I gave him some Tylenol, he ate a few bites, said he was done, and proceeded to throw up all over the kitchen floor. Ugh! That upset him a lot and we finally got him calmed down.
Mark's mom called shortly after to let us know that grandma is not doing well. She just turned 101 a few weeks ago and it's not that we expect her to be with us indefinitely, but it's still a sad thing. We love her very much, she is a beautiful, warm, funny lady!
So... Vacation is not starting out very relaxing - lol! If you Think of it, would you say a quick prayer for the kids and for grandma?

Thursday, August 23, 2012

Thankful Thursday

So, what's on your Thankful Thursday list today? Have you taken a few moments to think about the blessings that God has given you? I know there are days when it's harder than others. In fact, there are days when it seems next to impossible. And if you are having one of those days, know that my prayers are with you (whoever you are)... that God will show you something to be thankful for. That He will uplift you and sustain you. That He will shower you with His blessings and love.

  • Today, I am thankful for God's promise that He will be with us every step of the way. Even though He doesn't promise that life will be easy, He promises that if we believe in Him - it WILL be worth it! 
  • I am thankful for tears. Although there are moments when I wish I did not have reason for them, they remind me that I am human, that I am capable of giving and receiving love, that with great love comes great vulnerability. Tears and sadness remind me to rely on God for His healing and His wisdom, trusting that He understands even when I don't. 
  • I am also thankful for laughter. God gave us a full range of emotions with the full expectation that we would likely experience all of them over the course of our lives. I love hearing my children laugh so I have to believe that our Heavenly Father takes even greater delight in hearing our laughter and sharing our joys with us!
  • For rest. This is proving to be a crazy week. But, "vacation" starts tomorrow after I finish work. Soooo looking forward to a little R&R!
  • Thankful that I started this post last night actually. If I was typing it right now, it might not be quite so "thankful" - lol! I have had a crazy, busy day at work and am now waiting for a computer class to begin. Leaving work and arriving here at the location has been a comedy of errors, have to laugh or otherwise I might cry. I'll tell you about it later.
  • And one more thing to be thankful for... so far, the taper of Maia's seizure medication has been uneventful. We are over half-way through and have about 2 more weeks before she is completely off the Keppra. Please pray that she continues to be seizure free without this medication. She will continue to take the other seizure med, but we are slowly getting rid of meds and almost back to her pre-hospital medication count. WOOHOO!! 

Wednesday, August 22, 2012

A little humor and YAY Maia!

Every now and then, I outdo myself with my cooking. I don't do it on purpose, but all of a sudden as I am putting food on the table, it occurs to me...

At least for that meal, I am the QUEEN of the monochromatic meals!!

I really should take a picture when it happens 'cuz it's pretty comical.

A few weeks ago, it was orange.
Sloppy joes, carrots, cantelope. I think we even had orange jello for dessert.

Tonight, it was white.
Fish, tator tots, cucumbers (in sour cream), and cauliflower.

What should it be next time?? Any ideas?

Ok, on to the more important stuff. Matthew's hanging out at Grandmama and Grandpa Jerry's house for a couple of days - enjoying time with Sabrina and Guillaume, playing with Suki, and having a blast! He was so cute yesterday morning. I told him that Grandmama was coming to pick him up so that he could spend the night there. He got this big grin on his face and said, "Perfect!!" 

Maia's here at home with us. I took her to therapy yesterday. Linda (the PT) hadn't seen her for two weeks and said that she's making "huge progress!" Maia and I showed Linda how she is now starting to walk up the stairs with help. She's also less fearful when I attempt to walk down the stairs with her.  
Amy (the OT) worked on grasp (Maia still struggles with holding on to anything with her right hand) and also trying to keep her focused. Right now, attention span is only a few seconds on any given item. We've got to work on that at home, too. She gave me a suggestion for some baby food items to try at home to see if Maia would start feeding herself. When dinner was over tonight, I got out the banana rusk crackers. And here is what happened after I put one in Maia's left hand.

She ate nearly the whole thing by herself which was pretty exciting! 

Sunday, August 19, 2012

from Matthew.

I had a good weekend. On Saturday I helped daddy at the airport. He is getting ready for a party next Sunday. There was 2 men flying a strange looking airplanes. About 20 minutes after they left only one came back. He said Rick lost his motor and landed in a bean field.
daddy put a trailer on the old Suburban truck an we went to get him with 2 other men. when we got there we found out he broke his front wheel off in the beans. We pushed very hard and got the plane on the trailer and drove through the field back to the road. When we got to the road we got stuck in the ditch and called daddy's friend    Kenny who has a tow truck. He came and pulled us out. Boy that tow truck was cool.
It was getting dark so we took gravel roads back to the airport. Before we got there a nice lady stopped us with flashing red lights on her car. She drove ahead to make sure no cars would hit the plane. At times the plane was wider than the road so we had to drive very slow so we didn't hit any road signs. I finally got home at 11pm.

gooooood night.



Miss Maia is becoming quite the active little girl! I put her down on the floor in the living room while I went into the kitchen to clean up a bit this afternoon. Less than 5 minutes later, I found her in our bedroom. Now admittedly, it is probably not more than 10 feet, but still... she got there ALL BY HERSELF!!

And then I had her standing at the edge of the bed while I went into the bathroom. Came back and look at little Miss. She was busy trying to get everything off the top of the dresser. You go, girl!!

Saturday, August 18, 2012

New life

Maia brought this plant home from school for me in May - a Mother's Day present, just a few days before life changed. And in the midst of all the stress, this poor plant suffered. Oliver (one of our cats) decided that he liked the taste of the leaves and chewed them to nubs. I wish that I had taken a picture of it at the time, but you can get an idea in this picture. By the time Maia was home and I actually paid attention to anything in the house, it was barely hanging on. But, the plant was a gift from my sweet girl so I decided to try to save it.

I make no claims of having a "green" thumb. While I don't have a "black thumb," gardening is not my thing. I wish that it was, but I am lucky to keep a few plants alive in our home. An african violet from my grandmother, a plant that was sent for Bob's funeral, a couple of others. So, I did not have high hopes when I set the little container in the window above my kitchen sink.  I watered it when I remembered and kept watching. It didn't seem to be getting any worse. And then one morning, there was a new little shoot which had popped up in the middle. You can see it if you look closely below. 

I started to think about this in two ways. The first relates to Maia. She was taken to the brink of death (just like the plant). Slowly with lots of love and nurturing, Maia is beginning to show signs of life again. The remnants of the destruction are still evident to all, but there is hope as we see little signs of improvement and regrowth. And I continue to pray that both my precious gift from Maia and more importantly, my girl herself will continue to grow and thrive - one day being abundantly healthy and vibrant again!

My second train of thought has to do with myself (or really, every person). It has to do with God's work within us. When life is carefree and effortless, when worries are few, it's so easy to forget our dependence on Him. How often do we get a little too self-assured, self-confident, and think we can manage things on our own? While I would never claim that I don't need God, I admit that there are times when life is going smoothly and I am a little more "slack" in my relationship with Him. Maybe even coast a bit. And my spiritual development coasts, too. But, it is in those difficult moments when we feel like we are at that "near death" point (physically, emotionally, spiritually), that God can accomplish the most. When I acknowledge my inadequacies, my weaknesses, my failures, I can surrender to my Heavenly Father and rest in Him. And even when it doesn't feel like there is any change happening, God is working underground, in the rubble, in the dirt (whatever metaphor seems appropriate), in ways that we can't even begin to comprehend. Ever so slowly, those new little shoots appear. Signs of rebirth, growth, commitment, reliance on Him. So if I have the choice to live an "easy" life without God or experience heartbreak, trials, and difficulties knowing that He will see me through each of them, I will choose the second option because the eternal rewards are worth more than anything I can imagine here on this earth. 

Thursday, August 16, 2012

Thankful Thursday and a question for you

- Today, I feel God's presence so fully in my heart and I am oh, so thankful for that blessing. Truly, how do people make it through the storms of life without faith and knowing that He is with us? I think I have mentioned before that I start Thursday mornings at Assisi Heights, which is the home to a group of Franciscan sisters. My day begins a bit brighter as I stop to consider the beautiful scenery and the serenity of the convent.
- Thankful for the progress that Maia is making. This morning as I was bringing her upstairs, she was lifting her right foot to the next step each time. And looking at the smile on my warrior princess' face as she cuddled with daddy moved me to tears. If we all were that happy, the world would be a completely different place.
- Thankful for the laughter that Matthew brings to my life. Play is his absolute favorite thing and he loves it when I chase him around the house. Trying to take the time to do that more often.
- Thankful that God has allowed me to fulfill the dream of becoming a nurse practitioner and given me the opportunity to work with my favorite population, the elderly.
- Thankful that vacation is coming soon. Looking forward to some time spent relaxing with loved ones.

What's on your thankful Thursday list?

So, I have a question for you bloggy readers out there...are there questions you have for me or perhaps Mark? About adoption, about the kiddos, etc.? I was thinking about dedicating an upcoming post to this. If there are things you would like to know, feel free to leave your question under the comment section or send a private email, using the link to the right.

Monday, August 13, 2012

Status Quo

Not much for excitement around here today, but yes... sometimes that can be the very best thing. Work was a little calmer than Friday (I really needed that). When I got home tonight, I decided that I was going to put the kids to work. Matthew helped make garlic bread for dinner. I put Maia in her chair at the table and had her "help" me make desert. I helped her dump a package of oatmeal cookie mix into a bowl, add some cranberries, and other ingredients. We then stirred it together, poured it in a pan, and baked them. Had them warm with ice cream... best desert ever with one of the best helpers ever!! She seemed to enjoy the activity, so think we will be busy in the kitchen again soon.

It was nice to have a little slower pace this evening and I'm looking forward to having the day off tomorrow. It's our usual day of appointments - Matthew has speech in the morning. Maia has PT and OT in the morning and speech in the afternoon. So, lots of running to/from. And perhaps trying to find a bit of time for fun in there as well.

Sunday, August 12, 2012

Checking In

Sorry I have been missing in action for the past few days. The weekend flew by.  Friday was absolutely crazy at work and I came home feeling completely drained. We had our usual pizza and movie night. Matthew chose "Free Willy" as the movie. It's the first non-animated movie that he has chosen and I was curious to see how it held his interest. I was amazed at how Matthew enjoyed the movie. He's very intrigued by whales and sharks right now, so that made a difference.

Yesterday morning, we decided to take Maia for a walk. Matthew drove his tractor so that he could give Maia a ride in his wagon if she got tired. Mark and I stood on each side of her, holding a hand. We walked around the whole block (so basically, 4 BLOCKS!!)!! Yep, you read that right! She was a tired girl, but she did it!

In the afternoon, Mark and Matthew went to the airpark to work on things for the upcoming fly-in. Matthew enjoyed running around, driving his tractor, burning off some energy. He got to see an ultralight land and sit in it. He was so excited to tell me about it when they got home.

Last night, we were able to see my parents and friends from France, Sabrina and Guillaume, who are visiting my parents for several weeks. It was fun to meet them for dinner. Matthew had only been home about a month when Sabrina and Guillame were here last year, so they were able to see the changes that a year has brought. They brought wonderful treats for us to enjoy, too!

This morning, we had church in the park. It's our little town's annual festival and our church was asked to host the outdoor service. Even though it rained, we enjoyed the change of venue. There was some great special music provided by some of the young adults in our congregation. As Meghan and Trevor were singing "Super Hero," God really touched my heart. I was thinking about Maia and her illness, feeling so thankful for all of our friends and family who prayed for our warrior girl. God showed me an image of angels interceding on her behalf and coming before Him during those difficult days, begging for her life. It brought me to tears and is not something I will soon forget.

Although I am still sad that she has had to endure so much, God is faithful. We are seeing progress and thank Him for that. Maia is getting stronger and showing more interest in things around her. We are starting to set some limits again with unacceptable behaviors (such as pinching, grabbing glasses, etc.) and let me tell you, the girl is not too happy about that - lol! That's ok, she will learn.

Matthew was so cute tonight (before the attitude reared it's head again). He went over to Mark and said, "Please dad - you hug me." When Mark did, Matthew said, "I wub u, you a good daddy."  Which reminds me... Friday when I got home, he asked me to take a "nap" with him. A "nap" is basically a couple minutes of cuddle time on our bed. So, we were lying there and he was giving me a hug and kiss. As I mentioned before, I was wiped out. Matthew got right in my face, patted me on the head, and said, "oh honey... it's ok." He sure made me giggle! :-)

And that's what's happening around here. Hope you had a good weekend!!

Thursday, August 9, 2012

Thankful Thursday

Here's this week's list (definitely, NOT all-inclusive - lol!)

- Thankful that Maia had the follow up MRI scheduled for last week. Who knows how long we would have continued with things "status quo" without it. And so thankful that she really seems to be doing a bit better since Friday's surgery. Although it pains me that she had to experience yet another surgery, if it makes a difference, then it was a good thing.

- Thankful for Matthew who keeps me on my toes and amazes me with the things that come out of his mouth. He has come so far in the year that he has been home!

- Thankful that our friends the Gillis family had a successful court date last Friday. They are now in the 10 day waiting period before little "K" officially joins their family and they travel to Kyiv to complete paperwork and bring him home. Can't wait to meet him!

- Thankful for my hubby who holds things together at home. It would be so much harder to be at work if the kids were in day care. He tolerates my insanity (which believe me is saying a LOT) and manages to love me in spite of all my issues. God blessed me with a wonderful husband!

- Thankful for Meghan who made time in her busy life to spend some time with Matthew this afternoon! What a precious gift for our little guy who struggles (at times) to understand why things are so different.

What's on your list today??

Tuesday, August 7, 2012

One of these days...

We are going to have a day when we don't do anything, go anywhere - just hang out at home together as a family. Seems like we always have someplace we need to go and today was no exception.

Maia had therapy this morning. Physical therapy was first and Maia walked a good distance - probably about 250 feet - with Linda just holding on to one hand. She did decide she was going to set down once, but those legs are getting stronger. Worked on getting Maia up on her knees, too. She's starting to do that just a bit and if there is something she is really motivated to get, Maia will do a near crawl for a couple of moves. Progress!

Maia's time with Amy (OT) was spent working with balls and blocks, encouraging her to "hold" them and guiding her hand to put them in a specific place. This is a lot more difficult for Maia. Even before, her fine motor skills were not quite as good as her gross motor. So, it isn't a surprise that this is still the same now.

The therapists suggested today that Maia's sessions be cut back to once/weekly. They feel that she is continuing to make progress and that they are more in the coaching mode than anything - giving us exercises and suggestions for things we can do to help Maia's recovery. I think that perhaps my expectations need to change. I had been going along with the thought that we would be "gung-ho" with rehab with the goal of Maia returning to her "norm." But, reality will likely be different.

I'm struggling with how to balance those two things. I don't want to limit Maia's recovery or set my hopes too low. Our God can perform amazing miracles! But, I also don't want to live in a fantasy world and be shattered if Maia doesn't regain everything she has lost. If anyone reading this has any suggestions for how to be realistic while still keeping hope alive, I would love to hear them. As always, I will pray!

Maia had her eyes checked after lunch. We had ordered new glasses for her just a couple of days before she got sick and didn't know if the prescription would still be appropriate. At the last visit, it was looking like Maia was going to need another eye surgery, so I was kind of dreading today's appointment. Not sure I could take her back to the hospital for another surgery in the near future. Even going to the hospital today for therapy made her a bit apprehensive. Anyway, the good news is that no surgery is needed at this time. We will need to start patching her right eye for several hours/day for one month, get her glasses remade (the bifocals were placed too low), and see Dr. B back in four months. So thankful that it's as easy as that.

This afternoon, Maia's new wheelchair was delivered. It is perfect for her!! The company that we got it from is owned by a brother and sister team who are amazing. They are the ones who brought it to our house. Once Maia got in it, they fine tuned and adjusted things so that everything fits just right. Here's our girl in her new ride!

Although it saddens me that Maia had to endure yet another surgery, I do think that it has made a difference. There is just a bit of a spark that wasn't present last week. Praying, praying, praying that she does not need any more surgery for a LONG time!

Matthew and I enjoyed a little time together today, too. Cute conversation as we were sharing some ice cream.

Matthew: Mom, why you take care of people at work?

Me: That's what God wants me to do, Matthew. It's my job and He wants me to care for others and help them get better. 

Matthew: No, Mom. God makes them better and Jesus, too!

Me: Yep, kiddo - you are RIGHT!

Love that sweet boy of mine!!

Monday, August 6, 2012

Home again!

Miss Maia arrived home late this morning. Thank you to everyone who has been lifting us up in prayer over the weekend. If you would continue to pray for us to adjust again as a family, it would be so appreciated. The transition back home seems to be much more difficult for Matthew this time. It has been a long day so please forgive my brief post tonight. I will update more tomorrow.

Sunday, August 5, 2012

The parent I'm supposed to be

Maia and I were in the play room this morning. There were a couple of others moms who were there with their kiddos. A volunteer was helping kids with spin art. The cart for the spin art was tall so I picked Maia up out of her chair and held her so she could see what was going on. I could feel the other moms and their kids watching us. We finished our project and then sat at a nearby table, "playing" with a toy while I watched the kids make their projects. I choked back tears as I heard the kids choose their colors for the volunteer and talk to their moms about how cool it was. You see, that was the parent I was "supposed" to be. The parent of a child who functions at an age appropriate level, who is respectful, well-behaved, calm. You know... Cheerleader, class president, most likely to succeed, etc. When Mark and I began the process to adopt Maia, we knew that she had unique needs. And we gathered information about how best to meet those needs, feeling fairly confident that we could manage. Similar situation with Matthew. Like most parents, we had a pre-conceived notion of what our life would look like with these children in it. I had a picture in my mind of the parent I was "supposed" to be. Not only that, but I had a picture in my mind of the kids I was "supposed" to have. Pretty sure that those images and reality are not even remotely related. Not just for Maia, but Matthew as well. I often fail at being the parent that I want to be. And my vision of what the future looks like is entirely different today than it was 3 months ago. There are times when I struggle to understand why God chose this path for me, times when my selfish nature takes over, and I cry, whine, try to control as much of life as possible. I am guilty of trying to mold the kids in to who I think they should be instead of remembering that their Heavely Father created them. Given the fact that He made all of us in His image, that's pretty arrogant of me. God creates families for His purpose. And all situations can be used to glorify Him. He is the author of our lives and His ways are perfect. Just because a situation or circumstance doesn't look like I think it should, doesn't mean that it is a mistake. God doesn't make mistakes. I don't pretend to understand why this is the path that God has chosen for us. But, God knows why. Yesterday, a dear friend shared a comment that another dear friend had made. She said that I had a calling. That these children are my calling. God created me to be mom to Matthew and Maia. I was thinking about that this afternoon. If God gave me the chance to trade my two kiddos for two "typical" kiddos, would I? And the answer is of course, NO! These are the children of my heart and so precious to me - even in the difficult times. Even when life doesn't look like I think it is supposed to. I do trust unfailingly in God's plan and His divine purpose. And if I quit trying to understand and maintain control and allow God to work in me, He will gradually change me into the parent/person that I am supposed He created me to be.

Saturday, August 4, 2012


Just a quick note as I am pooped out tonight. One of the residents came in and showed me CT results this afternoon. The shunt is clearly in Maia's ventricle - praise God! I asked if he had time to talk for a bit? I asked some questions about how we proceed from here, knowing that Maia does not display typical symptoms. While I wasn't entirely "blown off," I did feel like he spent much time trying to answer before even hearing my questions. And it was reinforced for me that surgeons often are so focused on that isolated issue that they don't always stop to consider the bigger picture or previous history. Dr. D is off until Monday and Maia will be here until he sees her again. So thankful for my parents who were immediately available to pick Matthew up yesterday afternoon so he could spend the weekend with them. And also thankful for Mark's sister Sandi who is coming tomorrow night to spend Monday with Matthew so that I don't have to miss work and Mark is able to be here at the hospital until Maia is discharged.

Update and trying to understand

Maia had a good night. She had Tylenol a couple of times, but that was all she needed for pain. I got here at about 8:45 and Maia was alert, smiling. My beautiful daughter amazes me with her ability to smile in spite of everything she goes through. Yes Sabrina, she is a true warrior princess! X-rays of the head and belly early this morning and CT scan of the head at about 10am. Waiting for results. Dr. D was headed for surgery after stopping by briefly before I arrived so hopefully, we will see him later. Oh, just to clarify... This is not the same Dr. D who was wonderful when Maia was in rehab. I feel a bit bad for our new Dr. D as he has essentially been dropped into this situation. The first thing he said last night was that he had no explanation for how this has happened twice. You may remember that Maia had to have her shunt revised in late June because it was not in the ventricle. We were ASSURED following the revision that ultrasound guided technology had been used and the shunt was properly place. But, because no follow up images were obtained, the assumption was wrong. Dr. D thinks it may have been near enough to the ventricles to initially pull some cerebrospinal fluid, but only briefly. Thus, the reason that he ordered today's imaging. Truly, we struggle to understand this whole situation. Mistakes have been made since Maia's first MRI was obtained in January or February (can't remember which) of 2011. And our sweet girl thrived and blossomed IN SPITE OF the obstacles that we didn't even realize existed. Following her first shunt revision in February of this year, she soldiered on making progress even when we kept telling the doctors that something was wrong. But, because she "looked great," our concerns were dismissed. And because of that, Maia has lost so much. A child who jumped on the trampoline, who memorized Bible verses, who set the table everyday, who was full of joy and light is no longer able to walk, feed herself, communicate even the most basic need. And I will be honest, Mark and I are angry. Maia has lost so much, but so has Matthew. So have Mark and I. So have our family and friends. It hurts to see her struggle. And yet in spite of the losses, she remains full of smiles, cheerful, happy (well, at least most of the time). I want to write more about where faith is in the midst of this, but Maia just woke up from her nap so I will quit for now. Thank you for your ongoing prayers!

Friday, August 3, 2012

Surgery is done

We have met with the surgeon (more on that later) and are now waiting for the page that Maia is in recovery so that we can be with her.
surgery started 5:41pm
maia is being prepped for surgery now.


Surgery this afternoon. Yes, Susan... we are glad that she had the MRI and we now know that there is a problem. Just sad that our sweet girl has to endure one more surgery.

Prayers requested for Maia

MRI was scheduled for 9:45am. It was a limited scan so took less than 15 minutes. Maia was scheduled for Neurosurgery follow up at 2pm. Mark had just pulled in the driveway at home (10:30am) when my pager went off. Radiologist is concerned about placement and possible malfunction of Maia's shunt. Neurosurgeon doesn't want to wait for 2pm appt. Mark is at ED now with Maia for evaluation. Possibility of surgery. UGH! Please pray for our girl!!

Thursday, August 2, 2012

Thankful Thursday

Time to take a few moments to reflect on our blessings and acknowledge the many ways God is faithful in our lives.

  • First, we are thankful for Great Grandma Hansen. Mark's grandma will be 101 on Sunday and we will celebrate her birthday with her. What a blessing it is to have her still with us!!
  • I am very thankful that Mark is able to be home with the kids. I don't know how we would manage if they were in day care. God has provided for our needs thus far and we trust that He will continue to do so.
  • I'm thankful that today was a bit less crazy at work and even more thankful that tomorrow is Friday!
  • Thankful that Maia was able to attend summer school last week and this week. We can't really tell if  she remembers anything or not, but I still think it was good for her to be with her amazing teachers and around other kids.  
  • Also, thankful that Maia has an MRI tomorrow which should ensure that her shunt is working correctly. We also meet with Neurosurgery for a follow-up visit.
  • Very thankful that there is a back-up day care option through work. Matthew will be able to go there tomorrow during Maia's appointments. He and I visited on Tuesday so that it wouldn't be too scary for him. Thankful he is excited about spending the day.
  • We are always thankful that you continue to lift us up in prayer. It helps to know that there are people who recognize that we are still adjusting to this new life and encourage us as we navigate through unfamiliar territory!
  • Oh, so thankful that God is constant. Thankful that He reminds me that even though life is not always easy, He walks beside me every step of the way. If I keep my eyes focused on Him and the promise of eternity, somehow it's easier to get through the difficult moments because I can remind myself that they are temporary.
What's on your thankful Thursday list?