from mark

I have not posted for a long time. Melanie is doing a great job so I stay out of it. But I need to post this.  On Friday we (all four of us) went to see my mom and dad, they are home after spending time at their cabin for most of the summer. Maia has been taking a few steps by herself . When she saw Nana she started walking all over the place. So Maia is now walking on her own when she wants too. I'm sure Melanie will tell you more later.

Mark

The Cross

I received this cross as a gift from a friend of mine. It's beautiful and I love having it in our living room as a reminder not only of her, but of Jesus and His sacrifice for me. 

One day, I began to look closely at it. There were some imperfections in the painting.  At first glance, they are difficult to see (especially in the picture), but there nonetheless. 

I started thinking about those flaws and it occurred to me... 

Isn't that what the cross is all about?

Jesus was perfect, yet He chose to assume my imperfections, my sins.

The stakes that were driven in to His hands, His feet could be considered tangible proof of those sins - 

agonizing physical pain in addition to the spiritual burden that my Savior bore. 

For ME! How humbling is that knowledge?

To know that I am loved enough by Jesus to make that sacrifice - amazing!

Somehow... that imperfect cross seems all the more precious when considered from that perspective.

Thankful Thursday

It's late, but I do want to make a quick post for Thankful Thursday. Will you join me in wishing Happy Birthday to a woman who I am so thankful for, a woman who I am blessed to call one of my other "mothers." Mark's mom is a beautiful woman, inside and out - a Nana who is beloved by her Ukranian grand kids, who generously gives of her time to help us out, and who I enjoy so much. Happy birthday, Nana - you are the best!

Miss Maia

As I mentioned in my last post, Miss Maia had a busy Monday with appointments. In the morning, she was seen by the Neurology NP in the Spina Bifida Clinic. This was the woman who actually "found" Maia's shunt malfunction (which had been present for a year, but no one told us) back in February. This was the first time we had seen her since then. She was very patient with us as we asked a lot of questions. One of the things I wanted to know was if an MRI or EEG would show us how Maia's brain has been affected by the infection and/or seizures. Short answer is that an MRI might show this, an EEG would not. And bottom line is that getting those answers would not change anything in how Maia's recovery or treatment is approached. So... is it worth the stress and anxiety it would like cause our sweet girl? Probably not. As someone who likes to have all the answers, this is a difficult situation for me. I am praying for God to give me acceptance and reassurance that it doesn't really matter.

In the afternoon, Maia saw our wonderful Dr. S who is the Physical Medicine and Rehab specialist in the Spina Bifida Clinic. She is pleased with how Maia is doing from a gross motor standpoint. She has no answers (nor does anyone) about why Maia lost her speech. Dr. S is "hopeful" that she will gain it back, but is also quite cautious in saying that Maia may not regain that ability. We are praying daily that God gives Maia her voice back. It is one of the things we miss most. With Maia's brain injury, it is also possible that she has developed some autonomic dysfunction in her ability to regulate body temperature. At times, she becomes quite flushed and other times, her hands and legs/feet are almost purple from cold. No specific intervention at this point, more just supportive things to keep her warm or cool.

Today, I took Maia to her therapy appointments. Miss Maia surprised the PT and me. She was cruising by herself down the hall, holding on to the railing when she saw something across the hall that was pretty motivating to her. Next thing we knew, Little Miss Thing WALKED ALL BY HERSELF without holding on to anything for about 10 feet! WOOHOO!!

And that's our excitement for the day.

Weekend

The weekend went quickly, but we really had a pretty nice one. Mark and the kids met me in the cities on Friday afternoon. We played at the water park for a few hours and then had our traditional pizza and movie with cookies for dessert in our hotel room. Mark's friends Kellie and Greg came for a little while. It was their first time meeting Matthew and he, of course, charmed them. ;-) More swimming on Saturday morning before we headed for home. Yesterday afternoon was pretty low-key and the kids slept well last night - lol!!

Sunday school and church this morning. The Sunday School kids sang "Jesus Loves Me" as the closing hymn and Matthew sang with GREAT enthusiasm! He loves yelling "BUT HE IS STRONG." We had several comments about how Matthew keeps things lively at church. :-)

 Mark spent the afternoon working on our motor home. Matthew went along and "helped."  BTW - don't be impressed. It's not as exciting as it sounds. It is a 1983 and one of the walls is rotten because of a leak in the roof. Mark's replacing the wall. The main purpose of the RV is so that we have a shower at our cabin. That's because we have no running water there (our bathroom facility is an outhouse) and we usually haul water for drinking, cooking, washing dishes. Speaking of the cabin, we're hoping that next year we will actually be able to spend some time there. This year, we made the trip once shortly before Maia got sick and haven't been back. At the very least, Mark will need to go up to get things closed for the winter. But maybe, we'll be able to take a day trip as a family as well.

Maia and I stayed home. She was a little "punky" at lunch time so I gave her some Ibuprofen and laid her down for a nap. Seemed better when she woke up, so hopefully it was nothing. Not quite sure how to post videos on the blog, but for those of you who are friends with me on Facebook (and if you aren't friends - feel free to friend me), I'm trying to upload a short video of Maia. I think she will be walking on her own soon. She is starting to "cruise" on walls and furniture. Praising God for that!!

Doctor's appointments for her tomorrow at the Spina Bifida Clinic. I'm going to ask the neurology NP to show us the images of Maia's MRI/CT scans and explain what things mean and/or how they affect Maia's current level of functioning. Mark and I both feel like we have very little understanding about this. So, we hope to have a bit more information by the end of the day. We don't anticipate any big surprises at the visits, actually we hope that she surprises the people she sees with the progress she has made. If you would keep our girl in your prayers, that would be so appreciated.

Thankful Thursday

It's late and I am just going to take a few minutes for thankful Thursday.

• I'm very thankful for a wonderful hubby who is willing to have full responsibilities for the kids while I go to a conference for work. Love you Mark!
• Thankful that this same wonderful hubby was willing to brave swim class with both kids this evening by himself. Sounds like Matthew was a natural!
• For the opportunity to attend a conference that provides me with learning opportunities that will benefit my patients.
• Thankful for the chance to have dinner with my friend Kari. It was good to visit with her.
• Thankful that Kari was willing to indulge me. I had never tried Indian Food before and the restaurant across the street was supposed to be good. I really enjoyed the chicken tikka masala and some veggies. Oh, the garlic naan was yummy, too!
• Thankful for my wonderful bloggy friend Pat who surprised us with a thoughtful and totally unexpected care package! You touched my heart deeply!

It's way too late for this girl... I've gotta get some sleep. But, I would love to hear what you are thankful for.

Appointments

Just a quick update. Yesterday was busy with appointments. Matthew had speech in the morning and saw the urologist for his surgical follow up yesterday afternoon. Everything seems to be working well so Matthew doesn't need to be seen again by the urologist unless there are concerns.

We had a meeting at the school to discuss Maia's evaluation and goals. As always, I am so thankful for the staff. Their commitment to her is evident. The speech therapist is working to help Maia use some buttons to help her verbalize. There is one that will say her name when she pushes it. Another and will allow her to make yes/no choices. Both Speech and OT are working with Maia on feeding. Little stinker... It appears she's able to do a bit more than she let's on at home. ;-) PT wasn't there, but have some goals for balance and mobility. Although she will not be seen by PT and OT every week, they will make suggestions to be implemented into her daily classroom routine.

It was a kind of brutal day at work and long past the kids' bedtime when I got home. But, I was off today instead so I did get to spend a bit of time with them before leaving this evening for a conference in the cities. mark is holding down the fort at home. He and the kids will join me on Friday and we will spend one night at the water park hotel again as a special treat.

Feels a bit weird to be have peace and quiet in my hotel room. Yes, I am absolutely enjoying these moments and taking advantage of a little prayer time as well. The morning schedule starts early so I will sign off for the night.

Low key weekend and back to the routine

Rochester (the "big" town near us) has an adaptive park and rec program which offers some activities for kids with special needs through Community Ed. I missed the summer registration, but was able to get both kids registered for a couple of things this fall. On Saturday, Matthew and Maia spent a few hours at Stay-n-Play. The day is coordinated and staffed by college students who are pursuing special education degrees.

Matthew was a little apprehensive when we got there, but as soon as he saw the toys - he no longer cared that I was leaving - lol! And when I came back to pick the kids up, he was having a blast in a ball pit with a couple of other boys. I was feeling a bit learly about leaving Maia (just the hovering mom in me). It's hard when she can't communicate at all - either to let someone else know what she needs or to tell us what has happened. She is so vulnerable and that is a bit unsettling to me. But, I did leave her in very capable hands, knowing that she would have 1:1 care with one of the gals. I wish that I had a video camera rolling when I got back. Maia's back was to me when I walked in, so I was able to come along side of her and start talking before she saw me. She turned her head a little bit and I kept talking. Eventually, Maia turned to where she could see me and the smile that came over her face was absolutely beautiful. It brings me to tears just thinking about it. A smile of recognition and happiness that I was there. It also made me feel a bit bad, wondering if she thought that I had left her and wasn't coming back.

Stay-n-Play is offered once a month and the kids will go back in December for another visit. This Thursday, they will start swimming classes - once a week for eight weeks. I think it will be good for them. There is a support person for each child in the class. I won't be able to make it, but have told Mark to  make sure he takes the video camera. Both kids love being in the water, so I'm sure it will be a hit.

Yesterday was Rally Sunday at church - the first day of Sunday School. The parents attend this first Sunday and all ages get together to talk about the upcoming year. At the end of the time, each age group gathered with their teachers and went outside for a picture of all the kids. I was not expecting to get so emotional when that happened. It hurt that Maia couldn't join the group by herself. Mark pushed her wheelchair. It hurts that she can't actively join in to things that she was so excited about last year.

My heart aches for my girl. Sometimes, I feel a bit bipolar in this journey. Now before anyone blasts me, I am not attempting to make any type of comparison about how I feel and bipolar disorder. It's more an analogy. Some days, I do just fine. I can be accepting of where Maia is at right now. And other times, I just grieve for what has been lost.

Anyway, it's Monday and we're back into the routine of school and work. Matthew had a really good day. It's going to be so much fun to watch how he thrives as a result of pre-school. Of course, there are the not-so-great things he brings home as a result of the other kids. But, we will have to handle those as the situation presents itself.  I'm amazed at how much he has soaked up in just 7 days of school already.

I need to get some pics of Matthew to post, but will leave you with this cute one of Miss Maia.

Four months

Four months ago today, we woke up anticipating our usual routine. I can tell you that NEVER, EVER did it cross my mind that by the end of that day, Maia would be fighting for her life. It has been a long four months, seems more like a lifetime. Two weeks in the ICU, six weeks in the hospital, home for a month, and another hospitalization. Five surgeries for our sweet girl. She has been through so much.

Honestly, it often feels like we have lost Maia and now have a different child.  Even the "shell" seems different. There are moments when I get just a milli-second glimpse of the "before" Maia, but it's gone so quickly that I wonder if it just my imagination. So... how is Miss Maia doing?

Physically, she continues to get stronger. She is capable of standing and taking steps independently. Just lacks the self-confidence to do so. If Maia thinks we are holding on to her, she's fine. The minute she realizes that she is on her own, she plops herself down - lol! She's crawling around the house more and more. "Mean mom" is working on helping Maia to learn to crawl up the stairs again. Oh... let me tell you how much she loves dislikes that. ;-) But, she's slowly figuring it out. Making some progress holding on to things for brief periods of time. Will hold on to a food item and bring it to her mouth (only problem is that she keeps putting the food in without taking time to chew). 

Cognitively, things are going much slower. Maia is definitely more alert than she was when she first came home. There is recognition for familiar faces and items. No verbal communication right now and actually, she was making more sounds earlier in her recovery than she is now. As I have shared before, I think that is one of the most difficult things for me. I miss hearing her sweet voice and even miss her crabby voice - lol!! There are times when she cries, but she's not always able to even give us any indication why she is crying. Yes, we are able to discern some of her cries, but there are some that just come out of nowhere. Depending on what's going on inside that beautiful head of hers, she may be very frustrated and scared about why she can't do the things she used to do.

On a positive note, Maia is nearly back to her pre-illness medication regimen. She's down to one seizure medication, instead of two. And we've seen nothing remotely concerning for seizure activity. Still taking melatonin to help with sleep at night, but that's a whole lot better than the anxiety and pain medications that she required when she came home from the hospital.

It's hard to think about how this has affected Matthew, too. Although in many ways, he doesn't seem that much different, Maia's illness has made an impact. As a mom, I struggle with some sense of guilt about the loss he's had over the past four months. Matthew, too, has had to endure more in his five years than some of us do over our whole lives. The world he was just starting to feel secure in was turned upside down. And he isn't able to just tell us what he thinks or how he feels. Some of those emotions come out in other ways.  It can be a challenge. But, there are also moments when Matthew touches my heart with things he says and does.

Now... it feels like we are starting to develop a bit of a new "normal." That word feels wrong somehow, because how can this be considered normal? But there isn't a whole lot of choice in the matter. For as much as I would like to just crawl in bed and pull the covers over my head some days, that won't do much good. So, all of us get up, get dressed, go about our day and try to figure this different life out. We learn how to navigate in situations that we never anticipated. Some days, we do well. Others? Well... we make it through.

And I truly believe that the reason we are able to keep putting one foot in front of the other and can start to smile again at times is because God has sustained us over the past four months. Thankful that He is constant even when life as we know it changes in ways we didn't anticipate and that He promises to walk each step of the journey with us.

Thankful Thursday

What's on your list for today??

• First, I am thankful for healing. Maia's most recent surgical incision is nearly healed. It has been six weeks. A far cry from the surgical incisions in February that kept getting larger and looking worse as we tried to get people to listen when we knew things weren't right.
• Thankful for nights that are cool enough that we can have the windows open and cozy blankets on the bed to snuggle up in.
• I'm thankful for God's provision. Even though I am sometimes often guilty of wanting more, He has given me more than I need and more than I deserve. "Look at the birds of the air: they neither sow nor reap nor gather into barns, and yet your heavenly Father feeds them. Are you not of more value than they?" - Matthew 6:26
• Thankful that God sees the big picture even when I do not. Sometimes, I wonder what His purpose is in certain situations we are dealing with and why He chose Mark and I to be part of them. But, His plan is perfect. "Trust in the LORD with all your heart and lean not on your own understanding; in all your ways acknowledge him, and he will make your paths straight." – Proverbs 3:5-6

Rejoicing and weeping

A couple of reasons for rejoicing today.

 

Natalia has been found by her forever family!! I first heard this a few weeks ago unofficiallly, but now Natalia is on the "My Family Found Me" page of Reece's Rainbow. I am so happy that this precious girl will soon be in the arms of parents who adore her.

 

 

This is not a good picture, but you can get the idea... Maia actually picked up the wrap that Mark made her for lunch and attempted to feed herself. That's definitely worth rejoicing about! 

 

 

But while I am praising God for the happy news, my heart is also breaking. Children left behind in orphanages have been heavy on my heart recently. Reading the posts of a two of my bloggy friends has left me even more heartbroken with tears flowing regularly.

 

 

Meet Harvey 

This precious boy is three years old. He is fed by a feeding tube. According to Adeye's post, the hair in his arms is most likely due to malnutrition and a "total lack of human contact." That is beyond comprehension to me. How can children be placed in cribs and left there for YEARS with not even their basic needs met?

This is Thad.

Thad was born into a family. He lived with them until he was four years old, enduring who knows what. At four, Thad was beaten severly and left in a coma. He suffered severe brain damage and was brought to an orphanage. There he was placed in a crib and left with not even his basic needs met. From one horrific situation to another equally unfathomable existence.

 

 

And now, Sonny

Sonny has Down Syndrome and was born in a country where he was placed in an orphanage. He aged out of the detsky dom and was transferred to an adult mental institution. There, Sonny is bruised and beaten. No child deserves such treatment. This will be his life until a family steps forward to claim him as their forever son OR until death claims Sonny.

 

 

I was reading Adeye's post the other day while eating lunch and I literally almost vomited as she talked about praying for a little boy. These are her words, "I lie in my bed. Haunted by their sweet faces. Desperate to do more…and more. I think about each one I met, touched, laid hands on, prayed for...and begged the Father to take home to be with Him. I wonder. Is he still alive, the precious one with untreated hydrocephalus that has left his head the size of two watermelons? That amazing little boy. Created in the image of a God who adores him. His head literally splitting open and oozing water and blood from the extreme pressure it can no longer contain. Incomprehensible suffering!"

It was all I could do not to lose my lunch, this was too personal. Hydrocephaly... this could be our Maia if she had not received treatment. The thought of her experiencing something like this angel made me sick. To think about this sweet boy who has no one to comfort him, to hold him, and tell him how loved he is has brought me to tears frequently since hearing about him.

I know I have asked this before, but please search your heart... what can you do to make a difference in the lives of children who are waiting for their forever families? Have you considered bringing a precious child home? You don't need to be rich, you don't need to have a big home, you don't have to have all the answers. Kids don't care about that. They need love and commitment, someone who is willing to see them as God sees them. Can you help someone who is adopting right now? Can you pray, advocate, shout these children's names to the world? Please, please - do SOMETHING to help the kids above or other children who wait for their forever families.

"And then what?"

This is one of Matthew's favorite questions. He is constantly asking what is happening next. Today, tomorrow, "two tomorrows... ten tomorrows..." You get the idea. Matthew is so busy looking at and wondering about what is coming that he has very little concept of enjoying the present. To him, there is always something bigger and better around the corner.

I have to admit, there are times it drives me crazy. We are trying to work on keeping him focused and staying on task instead of heading off in fifty different directions. Working on finishing whatever it is he is doing before moving on to the next thing. Slowing down a bit.

Today as I was reading my devotional, God said very clearly to me, "Are you really so different than your son?" Ouch! I took a few moments to contemplate. And as I was looking in my prayer book, I came across something I had written shortly before Maia got sick. At the time, there was nothing "big" going on in my life. I was pouring out my heart to God, telling Him that I felt so insignificant when I looked at other blog moms out there. I wanted a huge following, I wanted my moments of "fame." I was asking Him to help me be content where I was at, to teach me to be satisfied with moments of quiet/calm. Reality is that when things are chaotic and crazy, I tend to whine and complain about how much I need some reprieve. But when that rest comes, I fight it with all that I have. Pride also comes to mind. Seeking affirmation from the world for the things I do instead of seeking to please my Heavenly Father.

For as much as I like to think otherwise, I am just as guilty of looking for the next great thing to enter my  life as Matthew is. God reminded me of that this morning. And He also gently said, "What you are doing is not insignificant. You are raising my children, ones who would otherwise never know the love of a family." By the world's standards, that may not be "greatness," but it is important. So, instead of asking "And then what, God?" I need to learn to slow down and enjoy these every day moments in our family instead of racing off to find the next big thrill. I'm asking God to fill my heart with satisfaction in the small things in life, knowing that the most important part of my future is eternity. And between now and then, it doesn't really matter whether I have achieved success by the world's standards. What matters is that I love God, love my family, and attempt to make a difference in the lives of those people who cross my path on this journey we call life.

Post-op visit and a day off

Maia actually got to go to her first post-op visit with Dr. D on Friday. If you remember, the day of her previous scheduled post-op follow up ended with Maia in surgery for another shunt revision. She did not have an MRI prior to this appointment, so maybe that made a difference - lol!

Dr. D was pleased with how Maia's incision looks. I don't remember if I blogged about this, but we had spent a Sunday afternoon two weeks ago in the ED because she just was not acting right and was running a temp. At that time, a head CT was performed. Dr. D reviewed the results of that and said that the shunt tip is definitely in the ventricle. The size of the ventricles is not much different than prior to the revision which leads him to believe that the previous shunt was draining at least some of the excess fluid from Maia's brain. I've been concerned about one of the burr holes and asked Dr. D to look at that. It seemed like it was getting bigger. I've been told that this "can't" happen, but my concern was that there may be infection or something eating at the bone. Anyway, Dr. D was not too worried about it. Unfortunately, these holes in Maia's skull will never fill in or heal. Right now, the skin is very thin over the holes and Dr. D hopes that this skin will thicken over time. We asked if there was any type of routine surveillance which should be done to ensure that Maia doesn't have issues with her shunt in the future. We have been told repeatedly that we will see signs that it is not working. And this is one of our biggest areas of frustration. Maia has never had any of the "typical" signs - with any of her shunt malfunctions. Dr. D was empathetic, but told us that the risk of performing head CTs regularly is greater than the risk of malfunction. There is the potential for adverse effects to her brain with frequent CT scans. So, this really makes Mark and I feel like we are in a difficult situation. We absolutely don't want Maia to go through any unnecessary tests and we don't want to be the hypochondriac parents who are running to the doctor for every little thing (believe me, we both tend to go to the doctor only if a limb is missing or something similar - lol), but on the other hand... we don't ever want a repeat of the past four months. We want to advocate for Maia and ensure that we are doing everything possible in caring for her. I can't speak for Mark, but it makes me feel so vulnerable for our warrior girl.

Maia is a bit of a challenge. No, not every fever or irritable episode is a shunt issue. But, they also can't be just dismissed as a self-limiting thing. There is no easy answer. And Dr. D acknowledged that. He will continue to follow her closely. His biggest concern at this time would be infection (most likely to happen in the first six months following revision) and plans to see Maia back in about a month. So, that's where things are at for now. Mark and I both like Dr. D. He doesn't make us feel like he's half-way out the door when we still have questions. He seems to be very skilled, but also has good interpersonal skills as well. We've heard positive feedback about him from others so we are happy that Dr. D will be following Maia.

Saturday has been a pretty low-key day. Mark had some shingling work to do. The kids and I spent some time at the park and had a picnic. It was nice to just relax a bit, think we need a few more days like that. Maybe soon...

Matthew's first day of school

Matthew enjoyed his first day of school. He didn't get to ride the bus TO school because Maia had a doctor appointment. But, he did get to ride the bus home from school which was "pretty cool." Mark tried to get some pictures of the arrival home, but Matthew was not thrilled about that. In fact, you can see in one of the pics below, he is actually trying to hit with his bag for taking a picture. Maybe he's practicing for the day when he has to evade paparazzi - lol!!

Thankful Thursday

I am going to be very honest. It's hard for me to think about Thankful Thursday this week. It's not that I am ungrateful because I KNOW that I have so much to be thankful for. God has been so very good to me and I am reminded of that over and over. And yet... I am struggling.

Grief seems to be hitting me hard lately. My heart just aches for so many things. The beautiful children who lie in cribs in orphanages on the other side of the world without mommies to cuddle them and tell them how much they are loved. Some of my patients who are experiencing difficult health issues without an end in sight. Thinking of the recent loss of our beloved Grandma Hansen (even though I know she is in a much better place and I would never wish her back). And of course, the biggest part of me is affected with grief for our sweet Maia. Truth be told, now that we are "in the trenches" (for lack of a better term), my heart hurts for the losses she has sustained. I'm not trying to be negative or pessimistic. It's probably just that we are facing more of those "firsts" since she got sick. I'll probably blog more about that another time since I don't want this post to be any more of a downer than I've already made it.

As I said earlier, there is much to be thankful for and on that note, here's my list for today:

• Today was Maia's first day of school. I am thankful for the teachers, paras, and staff who are so committed to our warrior girl. Just as she thrived last year after starting school, I know she will thrive again this year. I wasn't able to be home when she left this morning, but daddy did take a couple of pictures. 

 

 

• Speaking of school, tomorrow is Matthew's first day. I'm thankful that he will have the opportunity to make new friends and continue to develop new skills, as well as learn so much! Will share pics of his first day tomorrow.
• Hate to say it, but I'm thankful that tomorrow is Friday. You would think that I would be cruising into the weekend after my time off and a short work week. But instead, I'm looking forward to a laid back couple of days, hoping for some rejuvination.
• I am so very thankful for a Heavenly Father who loves me, who walks beside me always, who carries me when I can't walk, and who forgives my imperfections, my human-ness, and my sins. Thinking about His grace and mercy fill me with wonder and humility.

Weekend get-a-way

We've been MIA for a few days, just taking a bit of a break. Since our planned trip to Canada just wasn't an option, I talked Mark into heading out of town for a little vacation.

I wish I would have had a video camera rolling when we pulled in to the parking lot of the hotel. Matthew's excitement when he saw the tubes of the waterpark was worth every penny of the stay. Both kids had a terrific time. Maia giggled and grinned more than she has in ages. It was precious.

 

We spent one night at the waterpark hotel and then headed to a cheaper spot for our second night. From there, we went to SeaLife at Mall of America. Matthew's very into sharks lately so he got to see some close up which he thought was "pretty cool!" 

 

We had dinner with my friend Kari last night and headed home this morning. It will be nice to sleep in our own beds again. The kids went right to sleep, even after a good nap this afternoon. Guess they were tired out from their adventure!!