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.