New Family Pictures

This fall, our dear friend Kristin took some family photos for us. They turned out great :) Thanks Kristin!

more pics here

Hearing Therapy

Ellie has failed every hearing test and is labelled "legally deaf". She is on the registry of blind and deaf children in Michigan. We, of course, never bought that. We know that her brain does not always process stimuli correctly or quickly, but she can definitely see and hear.

In this video, Ellie surprises the audiologist. When she hears the noise she breaks into a huge smile. Who you calling legally deaf?

Winter is here

The boys are thoroughly enjoying it.

All dressed up...

For the church Christmas party. Her first princess dress, and she rocked it!

Ellie's Therapy

Ellie has been making "great" steps in therapy this fall. I put great in quotes because they are huge to us, but to the outside world may seem like nothing.

One thing that we are working on with her is using her hands to play and also to communicate. She has a "switch toy" that is a light-up toy operated by a switch that she touches. She is getting really good at it and also shows her joy and pride in her accomplishment.

This is important because if she can use a switch to play, it could move into using a switch to communicate and do even more sophisticated things. She could push a button for yes or no or even play computer games.

Here is the video:

Some Pics

More fall pics here.

Updates

We have had a super busy fall around here. Lots of fun with friends and family. What a blessing to be able to do so many activities with Ellie. But it is also a blessing to be able to do some things without her, thanks to our nursing coverage. Adam and I have been able to go out as a couple; we enjoyed our first night away since Ellie was born. We have also been out with friends and on a few dates as well. It has really helped us feel more normal. Nursing coverage has opened up new experiences for the boys too. They are a part of a homeschool co-op this year, and Ellie is able to stay home with a nurse. The boys are learning a lot, and Ellie is able to do her PT and daily routine. It is really nice for all of us. I do not regret the years I took care of her with no help, as we bonded a lot and I felt very confident in her care. But I am also grateful that we decided to pursue nursing help, as it has helped us achieve new goals in our lives too :)

Ellie is Three!

This past Sunday we celebrated Eleanor's third birthday! She is doing better than ever, and is a blessing to all who meet her. Her health is stable, she is interactive, growing, and still super cute ;) She has come farther than anyone expected. Thanks be to God.

Camping

Well, we passed another milestone we never thought we would reach: camping with Ellie! Last week we went to Family Camp with our church. It was a great week for our family.

Camping is something I never thought would be possible with Ellie. She has so much equipment, we worried about what we would do in case of emergency, we worried about the weather, we thought she was just too much work to take along. But over the past years and months, Ellie has proven to be stronger that we ever thought she would be, and her care is much less of a burden than it ever was. So we took the plunge and went camping!

We were able to borrow a camper that had A/C and pretty deluxe accommodations. We camped near friends that loved us and helped us in many ways. And there were friends everywhere to keep the boys occupied and entertained.

Our first camping trip: a success! We can't wait to go again :)







More photos are hosted on Facebook (public)

Yup, it's July

Hey all, sorry for being so MIA. This summer has proven to be more difficult for me than the winter was. I guess the weather, the yearly activities, the dates on the calendar-they all remind me of last summer and all that took place.

I just don't have much to say. I am hurting. I am surviving. I am growing. I am relying on God's grace. I wish there was something deeper to say, but sometimes at the deepest of our suffering, we stop thinking in words and just... feel.

I do want to keep in touch with you all though. And I don't want my readers to go away. So here are some photos of summer activities for you to enjoy.

VI sports day: a special day for kids with vision problems. The boys were able to partake in the fun activities, and Ellie was able to watch and enjoy a special day.






Father/Son Camping Trip: The boys were able to go on a rustic camping experience with Adam and some friends.

May Photos

We are having a fun month of May so far! The highlights have been several trips to Meijer Gardens, walks to the neighborhood park, and a Whitecaps game we attended with Ellie's school. Enjoy these pictures, and others in the photo album.

Video *edited

I get a lot of requests for updated video of Ellie, so when she started talking today, I seized the opportunity. When I lay her in her crib to change her diaper, she immediately brightened and started chattering. Her talking and excitement often makes her muscles start to tense and contract, so sometimes her noises have undertones of discomfort mixed with happiness.

**eta: I fixed the video. Sorry it wasn't working for everyone.

Ellie Update

I thought it was time for an update on our little princess. She has had a busy month!

Ellie's heel cord surgery was successful, and we got the casts off before our trip to Florida. It is so neat to see her foot in the correct position. The day she got the casts off she also was fitted for new AFOs (ankle foot orthotics). She will need to wear them around 20 hours per day to ensure that she maintains full range of her heel cord. Here is a picture of Ellie with her AFOs on:



The same day, Ellie was also fit for a TLSO brace (Thoracic Lumbar Sacral Orthotic). This brace will help support her spine since she does not have the muscle tone to hold herself up. Ellie is starting to get scoliosis because when she is sitting in her wheelchair or in any upright position, her body slouches and she is not able to maintain a straight upright position. This orthotic goes around her torso and holds her in an upright position without slouching. The first time we put it on her and set her in her wheelchair, she was a full two inches taller and her shoulders were up around her headrest! That showed us how much she was slumping in her chair.



In other news, we received the official word that Ellie has been approved for a type of Medicaid for children with special needs. This will pay for the in-home nursing and also a few other medical things that were not covered before. This is a huge blessing and a happy ending to the six months that I have been working on it. We have started with some daytime shifts of nursing, and it is going well so far. I am able to concentrate on schooling the boys and not worry about Ellie's needs being met. I am also able to enjoy Ellie while the nurse works on her equipment and other tasks. We have had a few evening shifts and spent some focused time on the boys at Frederick Meijer Gardens, as well as a had a date night! I think this will really help me juggle the needs of all the people in our family.

So that is what is going on right now. We praise God for seeing Ellie through another long winter and for his mercies new every morning!

Florida Trip

We just got home from a fantastic vacation in Florida! We were very blessed to go down there with Adam's parents and sister to a timeshare condo in Orlando. It couldn't have gone better. We had fantastic weather, Ellie was in great health and spirits, the boys traveled well (we drove), and we had great treatment at the Disney parks we went to. Now we are home, rested, and have great tans! :)

Here are some photos to wet your appetite. The rest are in a facebook album (accessible by all!).

Soaking in the Sun

Ellie's surgery

before surgery


new casts


comfortable after surgery is done


resting comfortably at home



Ellie's surgery went well yesterday. The doctor said everything went as expected.

We had to be prepared for the possibility that Ellie would need some sedation, so she was not able to have her regular feeds in the morning. That turned out to be unnecessary though as Ellie was the perfect patient and did not move or get too scared during the procedure. The doctor even allowed Adam and I to stay in the room and comfort Ellie while she operated! Ellie did cry quite a bit especially when the doctor was stretching the tendons. But she calmed down while the casting was done.

It was a full tenotomy, which means that the tendon was cut completely, but in infants and young children it reattaches and heals itself. So during this period of casting, the tendon is reattaching and healing, only in a more comfortable and natural position than it was before.

Ellie is now resting comfortably. She had a very peaceful night and is adapting to the casts really well. She will get the casts removed in around two weeks, at which point she will have new AFOs made (splints) that she will wear to keep the tendon stretched to the right position.