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Today was supposed to be photo day, but it turned out to be an exercise in flexibility. We planned this day for two weeks, and spent the previous night getting ready for a visit to a photo studio offering a special deal for holiday photos. When we arrived, the studio was packed with unhappy parents. Every chair was occupied and parents and children were sitting on the floor against the walls. They were running about an hour behind, so we decided to leave.
As a result, the kids had a great day of unexpected fun things to do. We took the children to a favorite restaurant while we decided what to do about pictures. The thought was that we could probably do a decent job all by ourselves, so we gave it a shot. We planned on taking the children to Glen Eyrie Castle, but it was closed to tourists for the weekend.
We then decided to go to Garden of the Gods. We got a couple of great shots of the kids, and they really enjoyed the beauty of this great park. We also took the children to the Pioneer Museum in downtown Colorado Springs. This is a really fabulous museum which was decorated beautifully for Christmas. Ethan and Emily both got a little bag of Pyrite after completing a scavenger hunt, then we were able to get some cute shots of all three of the children. Poor little AnnaSophia was really tired at this point, but she still gave her best for the camera. In addition to being worn out, she also has been battling a cold.
Ethan, Emily and AnnaSophia ended up having a much "funner" day than what we had originally planned. I thank the Lord that they are more adaptable than I am, and all along the way, Steve was cracking jokes. Steve will post some of the pictures to follow this post.
God Bless,
Mary
Saturday, December 6, 2008
Monday, December 1, 2008
AnnaSophia's last clinic appointment
Last week was a very busy week and I neglected to post an update regarding her last clinic appointment. Her last appointment went remarkably well. I was really expecting her to give us a very hard time with her echo, but she clearly likes to keep us guessing. She did so well. She was able to play with the extra probes as our echo tech attempted to get the pictures she needed. AnnaSophia was very happy and compliant. When the time came to get the pictures of her aortic arch, we fully expected her to protest. She did. As our tech left the room to get some toys, I played with AnnaSophia and her probe. We pretended to take pictures of my arch, and then her arch. She became more comfortable with me putting the probe up to her neck, but when the tech tried, she cried. Candice (our tech) decided to try something unconventional to get the pictures we needed. She had me maneuver the probe where she needed it, then captured the pictures. It was complete team work, but amazingly, we got the pictures we needed.
The really good news is that her echo is unchanged from the last time. Her cyclosporine levels were still a little high, so her dose of Neoral was lowered. She was doing well enough for us to skip clinic this week, and she will be seen next on December 10th. At her next clinic appointment, her CMV PCR will be checked. We pray that it will be zero so that she may come off of the Ganciclovir. I actually was able to visibly notice that her petichiae is so much better. It is almost completely gone.
I pray that she will continue to improve and get stronger each week. God has been so good to us, and we have been enjoying our time home with her. She continually smiles and "talks" to us. She really loves her daddy, and she has been giving all of us these wonderful, slobbery baby kisses. She is clearly filled with an incredible, infectious joy. Praise God for happy babies!
God Bless,
Mary
The really good news is that her echo is unchanged from the last time. Her cyclosporine levels were still a little high, so her dose of Neoral was lowered. She was doing well enough for us to skip clinic this week, and she will be seen next on December 10th. At her next clinic appointment, her CMV PCR will be checked. We pray that it will be zero so that she may come off of the Ganciclovir. I actually was able to visibly notice that her petichiae is so much better. It is almost completely gone.
I pray that she will continue to improve and get stronger each week. God has been so good to us, and we have been enjoying our time home with her. She continually smiles and "talks" to us. She really loves her daddy, and she has been giving all of us these wonderful, slobbery baby kisses. She is clearly filled with an incredible, infectious joy. Praise God for happy babies!
God Bless,
Mary
Monday, November 24, 2008
Giving Thanks
I have heard the holiday Thanksgiving referred to as Turkey Day. I have heard some refer to its significance as nothing more than a gluttonous feast followed by lots of football watching--not that there is anything wrong with eating lots of good food, or watching a game. I have watched retailers completely gloss over this holiday, rushing from Halloween directly to Christmas. I am saddened that one of my favorite holidays seems to be disappearing.
This Thanksgiving seems to mean so much more to me than in years past. The pilgrims chose the difficult path so that they might have the freedom to worship the Lord according to scripture, without threat of incarceration. After surviving the treacherous trip across the Atlantic, they fell at the throne of our Lord giving Him thanks. They lost over half of their husbands, wives and children that first winter, yet they sought to praise the Lord through their trials. Even when food was rationed down to five kernals of corn per person per day, they never lost faith.
When you think about it, Thanksgiving is really one of the most fundamental Christian holidays. This Thanksgiving, Steve and I are especially moved to be celebrating this holiday with all three of our children. It is very exciting to see AnnaSophia thriving and eating her first Thanksgiving meal at home with us. When we asked Ethan and Emily what they were thankful for, they both replied that they were thankful that AnnaSophia was home, that she wasn't sick anymore and that she was alive. We couldn't agree more. God has been so merciful and given us more time with our baby girl. We have truly been blessed beyond measure, in every way. No matter what the circumstances, we give Him all the praise, glory and honor. God is good, and He is sovereign.
Mary
Psalm 100
A psalm of thanksgiving.
1 Shout with joy to the Lord, all the earth!
2 Worship the Lord with gladness.
Come before him, singing with joy.
3 Acknowledge that the Lord is God!
He made us, and we are his.
We are his people, the sheep of his pasture.
4 Enter his gates with thanksgiving;
go into his courts with praise.
Give thanks to him and praise his name.
5 For the Lord is good.
His unfailing love continues forever,
and his faithfulness continues to each generation.
This Thanksgiving seems to mean so much more to me than in years past. The pilgrims chose the difficult path so that they might have the freedom to worship the Lord according to scripture, without threat of incarceration. After surviving the treacherous trip across the Atlantic, they fell at the throne of our Lord giving Him thanks. They lost over half of their husbands, wives and children that first winter, yet they sought to praise the Lord through their trials. Even when food was rationed down to five kernals of corn per person per day, they never lost faith.
When you think about it, Thanksgiving is really one of the most fundamental Christian holidays. This Thanksgiving, Steve and I are especially moved to be celebrating this holiday with all three of our children. It is very exciting to see AnnaSophia thriving and eating her first Thanksgiving meal at home with us. When we asked Ethan and Emily what they were thankful for, they both replied that they were thankful that AnnaSophia was home, that she wasn't sick anymore and that she was alive. We couldn't agree more. God has been so merciful and given us more time with our baby girl. We have truly been blessed beyond measure, in every way. No matter what the circumstances, we give Him all the praise, glory and honor. God is good, and He is sovereign.
Mary
Psalm 100
A psalm of thanksgiving.
1 Shout with joy to the Lord, all the earth!
2 Worship the Lord with gladness.
Come before him, singing with joy.
3 Acknowledge that the Lord is God!
He made us, and we are his.
We are his people, the sheep of his pasture.
4 Enter his gates with thanksgiving;
go into his courts with praise.
Give thanks to him and praise his name.
5 For the Lord is good.
His unfailing love continues forever,
and his faithfulness continues to each generation.
Wednesday, November 19, 2008
AnnaSophia's opinion on her echo
AnnaSophia had her clinic appointment today. All was going well until it was time for her echo. This little one had three adults and her brother and sister all trying to entertain her to no avail. We tried toys, puppets and a baby einstein video. Everyone in cardiac clinic knew that AnnaSophia was not cooperating by the intense screams coming from echo room 1. We finally decided to give up after a while. AnnaSophia stopped crying right away, and was concerned that we were blocking her view of baby einstein. She was such a turkey. The good news was that she cooperated with her EKG.
She is weighing in at 15 lbs. 10 oz. and is looking very good. She still has some slight petichiae, but seems to be feeling well. We will recheck her CMV PCR in two weeks. We pray that her PCR will be zero so that she might come off of her ganciclovir. AnnaSophia is settling in at home and seems to be very happy to have the entire family together. She is crawling everywhere and attempting to pull up into a standing position.
I have been surprised by some of the conflicting emotions that I have felt since being home. On the one hand, it is so nice to be home and together as a family, especially with AnnaSophia, our little miracle girl. On the other hand, it is almost scary to be so far from the hospital. Home seems so "normal", but AnnaSophia's life has been anything but normal. I am so thankful that the Lord has given us more time with our precious little angel, but part of me can't help but feeling like I am waiting for the other shoe to drop. I am hoping that this feeling will eventually subside as she gets better and time passes. I thank the Lord that He is so good and ultimately in control.
Trust in the Lord with all your heart, and lean not on your own understanding; in all your ways acknowledge Him, and He shall direct your paths.
Proverbs 3:5
Blessings,
Mary
She is weighing in at 15 lbs. 10 oz. and is looking very good. She still has some slight petichiae, but seems to be feeling well. We will recheck her CMV PCR in two weeks. We pray that her PCR will be zero so that she might come off of her ganciclovir. AnnaSophia is settling in at home and seems to be very happy to have the entire family together. She is crawling everywhere and attempting to pull up into a standing position.
I have been surprised by some of the conflicting emotions that I have felt since being home. On the one hand, it is so nice to be home and together as a family, especially with AnnaSophia, our little miracle girl. On the other hand, it is almost scary to be so far from the hospital. Home seems so "normal", but AnnaSophia's life has been anything but normal. I am so thankful that the Lord has given us more time with our precious little angel, but part of me can't help but feeling like I am waiting for the other shoe to drop. I am hoping that this feeling will eventually subside as she gets better and time passes. I thank the Lord that He is so good and ultimately in control.
Trust in the Lord with all your heart, and lean not on your own understanding; in all your ways acknowledge Him, and He shall direct your paths.
Proverbs 3:5
Blessings,
Mary
Tuesday, November 18, 2008
Mary = organization queen
Our apologies for the delay. Mary, hailing from the planet Listmaker, has zapped our home with a ray gun loaded with organizational frenzy. The Quarks of Berryland have tried to resist, led by their fearless leader AnnaSophia. However, resistance is futile. The Quark Berries were soon overwhelmed by the Queen of Listmaker and they became slaves to the organizational imperialism.
Back on Earth, AnnaSophia is doing very well. She is now weighing in at about 15 pounds, 7 ounces. And, her cyclosporine levels were perfect at the last clinic appointment. Perhaps, the only concern, is that more and more people are saying she looks like her daddy -- GASP! Seriously though, she is so beautiful to us and a testimony to God's grace.
Organization chaos aside, it has been so great to have the whole family together again, and to have our precious little girl with us. There were many times that we did not know if we would see this day. God is good. It feels like home again.
Blessings,
Steve
Back on Earth, AnnaSophia is doing very well. She is now weighing in at about 15 pounds, 7 ounces. And, her cyclosporine levels were perfect at the last clinic appointment. Perhaps, the only concern, is that more and more people are saying she looks like her daddy -- GASP! Seriously though, she is so beautiful to us and a testimony to God's grace.
Organization chaos aside, it has been so great to have the whole family together again, and to have our precious little girl with us. There were many times that we did not know if we would see this day. God is good. It feels like home again.
Blessings,
Steve
Sunday, November 9, 2008
Welcome home AnnaSophia!
First, our apologies for the delay in posting an update. The last week or so has been a whirlwind of activity as we transitioned the family back home.
Aren't those great pictures of some pretty ladies? Wow.
Our little AnnaSophia has been through so much. To see her back home is an amazing testimony to the fact that God still works miracles. Sure, there are no big speeches, widespread media coverage, or fainting audiences, but our God does not need such things to reveal His majesty. Instead, our Lord takes the smallest and weakest among us and builds them up into His greatest works of art. My baby daughter is a mighty work of art by our Creator, and He has blessed our family immensely by sharing AnnaSophia with us.
During the election season and its aftermath, it was easy to get caught up into everything associated with our democratic process. Still, it came to the point that God reminded me how He has put things into perspective during our journey with AnnaSophia. No politician can replace the inspiration or purpose we find in Him. So, while we did vote and things did not go as we had hoped, the outcome had little meaning in the big picture of our lives. With that said, we love our country and will continue to pray for it and our elected leaders.
Healthwise, AnnaSophia is doing well right now -- praise God! Her anti-rejection medication dosage was even lowered recently. While she will be on these medications for the rest of her life, this is a positive step.
Moving the family back home has proven to be a lesson in organization. We've spent the last week getting organized, giving items to Goodwill, and throwing a lot of trash out. I'm not sure the trash collection people like us much these days.
During the move, we also had the honor of celebrating Emily's 8th Birthday! Here are a few pictures from the celebration:
Aren't those great pictures of some pretty ladies? Wow.Many blessings to all, and thanks to each of you for your awesome outpouring of love and support.
Steve
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