Family Photos

As I mentioned in an earlier post, Andre's cousin is a professional photographer and she very kindly took pictures of all of us when we visited with her and Andre's sister, Olga, last week. I was not prepared AT ALL to have photos taken, so excuse my appearance, but I love all these photos of Andre's sister and her family! Olga is Andre's younger sister, by four years and she and her husband have 7 children: Anna, Danielle, Phillip, Neena, Andre, Peter (who is in heaven now) and Marianna.

Vladimir and Olga

Anna and Danielle

Phillip and Andre

Neena

Marianna 

Love this one of them! 

Me and my girl

Sophia, 10 months

Jack, 2.5 years

Two peas in a pod

Daddy and his girl

Yea, ok, none of us look great, but this is the only family photo of us recently!

Thank you Ella, for taking all these!!!

Family Visit

This is a week late, but I wanted to share some photos of our day with Andre's family last Monday. His sister and her family were driving through on their way back from vacation and stayed a couple of nights with Andre's cousin, Ella,  who lives about an hour from us. So we went out there to spend the day and visit with everyone. We haven't seen Olga and her family in almost two years!!! For one reason or another, we haven't been able to make the trip up north, and with their 6 kids and a huge remodeling project on their new house, it's difficult for them to get down here.

We had such a great day together and Jack loved playing with his cousins (who he only ever sees on Skype!!). Everyone loved meeting Sophia too and she lapped up all the attention! I really enjoyed spending time with Olga and seeing how much her kids have grown up recently.

Jack and Marianna, Olga's youngest (they are a year apart)

Olga meeting Sophie for the first time

We had a delicious Russian lunch complete with salo (bacon fat) which Sophie LOVED! Her great-grandpa, Deada, was very proud when he heard she ate it!

Lunchtime

Sophie was entranced with all the toys at Ella's house

Andre, Jack and some of the boys wrestling

Thank you for hosting us all Ella! We had such a special time together and hope it won't be so long before we do it again!

P.S. Ella and her husband are professional photographers and she did an impromptu photo shoot of all of us...will post a few of those soon. 

100 Miles

Yes, that is how much I drove today. With the two kids. Whew.

But it was all for fun. Or craziness. Ah well. We drove out to visit our new friends, the Knoblochs, this morning to join them for their Fall Festival. It was fun to see them again and Jack LOVED all the activities for the kids...

Getting to climb on a real life fire truck

Miss S was a little awestruck by the crowds

So many fun kid-sized games

And experiencing a bounce house FOR THE FIRST TIME!

Then I drove back into town and dropped the kiddos off at my dear friend Robin's house for the afternoon. She was so kind to have them and they enjoyed themselves immensely.

Loving Aunty Robin time

And off I went, sans the small ones, to enjoy my friend Lyndon's baby shower. Ness and little Emma were there too and it was good to see old friends.

Little Miss Em

Love this pic of Lyndon surrounded by all these precious pink happys, preparing for her long-awaited baby girl!

So special to share life with my sis and now her little ladies too.

 I really missed my Sophie being there too!

After picking the kids up we headed over to meet Daddy for an impromptu dinner out. And now, everyone, including me is in bed. Aaah!

October Birthday Celebration

On Sunday night, we got together with my siblings to celebrate mine and Rachel's birthdays, both the first week of October. It was a really fun evening...thanks Ness for doing dinner and that FAB dessert (Death By Chocolate Trifle!)!!

The birthday girls with the three newest babies of the family

Finally all three babies can sit so they really enjoyed playing together

Only photo I have of the 6 cousins!

The "big" kids playing play dough

Cousin twins  Jack and Alexis (2.5 yrs old now)

The babies: Wyn 7 months, Emma 7 months and Sophie 10 months

Providential

I've been meaning to tell this story for some time, but am glad I waited til now. 'Cause now we have some photos to go with it! If you know me on FB, you may have seen some of these details, but here is the full story :)

After Sophie's hospital stay in August for the virus, she was sent home on oxygen and a feeding tube. We still had no answers as to what was going on with her but we knew she had a collection of symptoms that weren't adding up to anything good: Failure to thrive, episodes of panting, dropping oxygen levels when sleeping or tired (desats), crackles in her lungs, reflux, working hard on breathing (retractions), chronic cough and turning blue with high fever.
 
Not good. And very discouraging to have no answers.

About a week after her August discharge, my brother called me to say he had read a news article about a little girl who had a service dog to carry around her O2 tanks. She needed O2 because she had a lung disease. Upon researching the condition, my brother said it sounded like they were talking about Sophie! Every symptom!

And with that, we were set on the path to discovering what was wrong with our girl. Praise God!

The condition we suspected is an Interstitial Lung Disease called NEHI (Neuroendocrine Cell Hyperplaysia of Infancy) and is very rare. Most pediatricians haven't heard of it and even a lot of pediatric pulmanologists don't deal with it enough to be familiar with it. 

Our pediatrician referred her to a pediatric lung specialist here and got her in to see him immediately. This doctor scheduled her for a several day stay in the hospital to run diagnostic tests. NEHI can be diagnosed by CT scan but usually by lung biopsy. Given Sophie's small size, we didn't want to jump to the biopsy and so were hoping that the typical NEHI markings on the lungs would show up on the scan if that's what she had. And they did! Although mild, the doctor could see ground glass opacities in her lungs, the classic markings of NEHI.

There is no cure for this disease and the only treatment is oxygen supplementation and nutritional support as needed. So, Sophie is on a special formula to help her grow and O2 whenever she is asleep and as needed during the day.

BUT, back to the story!! After the dust had settled a bit, I went back and reread the news article about Alida Knobloch. Only to discover that the family lives an hour away from us! I contacted them and they have been wonderful in their encouragement, information sharing and support.

And this past Saturday we were able to meet them, spend some time with them at their home and then attend a fund-raiser for Alida's NEHI research foundation. We had a really great afternoon with them and found them to be so generous and helpful...they gave us this great back-pack to carry the oxygen tank in that doubles as a diaper bag. So no more lugging around two different bags for Sophie. It's already helped me so much the past two days!

Our little NEHI girls with the famous Mr. Gibbs!

Sophie and Arella, Alida's little sister who is the same age as Sophie

Jack had a great time playing with Alida and Mr. Gibbs

Debbie was so kind and helpful in giving me all sorts of tips about dealing with daily O2

Us with the Knobloch family!

Maybe Soph has a Mr. Gibbs in her future!

Both the kids loved the zumba music during the fund-raiser

Alida was really sweet to Sophie! 

We are so thankful that Alida's family shared her story and that God brought it to Stephen's attention. Many of the kids who have NEHI, go through months and even years of testing and different medications and treatments before they are diagnosed correctly. We are so thankful that Sophie has been spared all that and we now know what is wrong with her. And that this family, who has already dealt with this condition for three years, lives so close to us!

Praise God for how he works and weaves all the pieces of our stories together in his beautiful tapestry!

10 Months Old

Longer out than in! Sophie turned 10 months old on Tuesday and is suddenly seeming so much older. It's hard to remember how old she really is because she is still so tiny, but she's doing lots of big girl things now and trying hard to keep up with her big brother.

Big girl!

We went to see her pulmanologist this week for a follow up after her diagnosis and she weighs 14.1 lbs and is 27 inches long. He was satisfied with her and said she was where he expected her to be: not fabulous but doing ok for now. He is still holding off on the lung biopsy, but is doing a surfactant gene blood test on her to rule out those issues and is working on getting her the synergist shots (RSV vaccine) that kids with lung diseases are usually covered for by insurance. We see him again after her first birthday in December, barring any illness before then.

Little Miss Piggy...I've never seen a child get this messy while eating!

She has 5 teeth now and is working on three more. Her two top front teeth are in and she looks so much older now! She has discovered that she can crawl around the house now and whenever I loose her, I just follow her oxygen tubing. Ha! I am keeping her on O2 most of the time at home, to give her a rest from breathing so hard. Apparently this helps NEHI kids to grow better and quicker. She is trying to stand on her own and pulling up on low tables and tries to climb everything. She wants to be moving constantly now!

And boy, does she LOVE table food! We are filling her up on fatty protein, as per her GI doc's instructions, so peanut butter, cream cheese, yoghurt, cheese and meat are what I usually offer her. I am trying to keep up with veggies too (although the doc said these aren't as important for growth), as I want her to develop a taste for them.

She is really good about not pulling at her O2 tubing and manages really well with it.

She sleeps pretty well at night and takes two naps a day. However, she still wakes at 10 pm and about 3 am to eat. I'm kind of over  that! The doc said that if she wakes, I need to feed her, so no crying it out yet. Oh well.

First time we let her off her bath chair to move around in the bath. She was thrilled!

Generally she is a very content and sunny little girl. Jack is loving that she is responding to him more and they often chat away to each other and play nicely together. They both love it when I go to get him in the morning and let her sit in his bed with him for a while. So sweet. I pray they will always be close and love and protect each other.

Happy 10 months little Sophie Joy!

Church Retreat '12

This past weekend was our bi-annual church retreat.  We have held it at the same location every time and this was our third retreat here. It's been really special for our family, as each time we've come, we've been in a different stage of life...first on our own, second time with Jack as a 6 month old, and now with our TWO kiddos :)

I always enjoy all the details of organizing this event and love spending time with our church family. This year, we again had around 300 people come, including kids and the weekend went really well. It was a little colder up there than the weather man had predicted but we did get some lovely sunshine.

The past two retreats, we have stayed in one of the hotel rooms, but this year we stayed in a chalet with two other families and this worked out so well for us and was very comfortable...we even got good sleep and naps!

For Andre and me this weekend was harder than we'd expected as Andre's dear American "Mom" Carolyn, who has been battling cancer for the past year, began to fail very fast, last week. On Friday morning, we drove up to say goodbye to her, which was very emotional for both of us. We then drove to Cohutta Springs Conference Center about 40 minutes away to set up for the retreat. We got a call on Saturday morning to say Carolyn had died around midnight on Friday, so made plans to go up to Chattanooga on Monday for the funeral. We were so thankful to have been able to see her and say goodbye.

Thankfully, the weekend was a really good one for us and a good encouragement and distraction and special time for our family. And it was lovely to have Steve and Rach and Baby Wyn there too. We missed Ness and Sean though! Because I was so busy keeping an eye on things, Andre was on baby duty and took such good care of the kids, getting them to bed each night so well. Jack had a kids program each morning but Andre watched Sophie for her naps and would then bring her up to the conference center in time for meals. This really helped relieve my stress and enabled me to be focused on retreat stuff.

The only photo of Miss S!

Dying to try the canoe!

Picking out oars proved to be a big deal!

All ready to go

Beautiful place to be...we enjoyed the evening outdoors fireplaces each night

And the horses, turkeys and chickens were the highlight for Jack

Traveling pro...

One night he wanted to go outside to "hunt deer". As he had just had a bath, we wrapped him up nice and cozy to stand on the porch!

Both the kids LOVED this chair at our friends' house in Chattanooga last night!

All in all, the weekend went off very well and lots of fun was had by all. I am very glad to be home now though, after an emotional and pretty stressful week!