Posts
AnnaSophia started the day with a fever and not feeling well. After a call to transplant, we decided to have her seen. She had a lot of blood work drawn, including checking her CMV levels (cytomeglovirus). Her donor was CMV positive, therefore, AnnaSophia was on a 6 week course of an antiviral called Valgancyclovir. Last Saturday, she was able to stop the medication. There was some concern today that the CMV could be causing some problems, or she could just have a virus.
This is one of those situations where I just keep backtracking and playing everything over in my head trying to figure out how she could have contracted anything. We are so careful in protecting her. No one in the family is sick, but Jilayne (transplant coordinator) suggested that sometimes people can carry a virus and not actually be sick. In the case of an immune suppressed person like AnnaSophia, she can catch the virus, whereas no one else would necessarily show symptoms.
So now we have a new protocol, as per Jilayne, for the next several months. In addition to very good hand washing, no one is allowed to kiss on her excessively, be in her face, allow her to put her hands in or near people's mouths, touch her hands, etc. for awhile. I guess that I am the exception, seeing as I get to breastfeed her. In essence, she needs to be "bubble baby" for awhile.
Hopefully, she will get better over the weekend, and we can avoid anymore visits to clinic until Monday. We had to increase her cyclosporine (to guard against rejection), because her levels today were very very low. Jilayne believes that this was possibly due to all of the vomiting. The team will continue to keep a close eye on her to make sure that whatever this little illness is does not affect her heart.
Prayers are appreciated regarding her newest challenge. We pray that she will overcome this, without damage to her precious new heart.
Mary
For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future.
Jeremiah 29:11 (NIV)
Wednesday, August 20, 2008
Tuesday, August 19, 2008
Tuesday night vomit fest
AnnaSophia started the day out really well. She was so happy and almost seemed like a normal little baby. I noticed that she seemed to be getting on a really great schedule, with dependable nap times today. This is such a good thing, as I use this time to homeschool Ethan and Emily. Even though I know that we are still going to have tough days, it seems like it takes me by surprise every time.
AnnaSophia was really hungry around dinner time and ate her cereal and applesauce like a champ. Later, she just didn't seem right, and started vomiting while I was nursing her. That was just the beginning. She just kept getting sick time after time tonight. She does not seem to have a virus, and after contacting Jilayne (our transplant coordinator) she reminded me that we will have good days and bad days, and that her medications can make her really sick.
Our poor little angel just seemed to have the wind knocked out of her tonight, but as I write this, she is resting peacefully. I just pray that this latest little bump in the road is short lived, and that she will not get dehydrated. I pray that the newness of tomorrow morning will bring peace for her little digestive system, and that the vomiting will not have any adverse effects on her heart.
Mary
AnnaSophia was really hungry around dinner time and ate her cereal and applesauce like a champ. Later, she just didn't seem right, and started vomiting while I was nursing her. That was just the beginning. She just kept getting sick time after time tonight. She does not seem to have a virus, and after contacting Jilayne (our transplant coordinator) she reminded me that we will have good days and bad days, and that her medications can make her really sick.
Our poor little angel just seemed to have the wind knocked out of her tonight, but as I write this, she is resting peacefully. I just pray that this latest little bump in the road is short lived, and that she will not get dehydrated. I pray that the newness of tomorrow morning will bring peace for her little digestive system, and that the vomiting will not have any adverse effects on her heart.
Mary
Monday, August 18, 2008
Say cheese!
Today at clinic, AnnaSophia had a visitor from our local Fox 21 affiliate from Colorado Springs come to visit. Reporter Christina Salvo was interested in AnnaSophia's story, and came to Denver today to see what a normal day in clinic looks like for AnnaSophia. She interviewed myself, Steve and our transplant coordinator, Jilayne. Thankfully, AnnaSophia was in a good mood and was fairly cooperative through the interview.
I have been surprised at the interest that has come about regarding AnnaSophia's story. Christina was very nice and made a tremendous effort to truly understand the facts surrounding our little one's life and struggles. The interview was to air tonight during the 9pm news. I have not seen the story, because I cannot get the Colorado Springs news up here, but I was told by some family members that the story was well done. Kudos to Christina Salvo for her hard work!
I can honestly say that I have a new appreciation for what Steve does for a living, because it was very hard for me not to feel silly in front of the camera. I had to be very concious about what I was saying, so as not to sound studid. I am not quite sure how Fox 21 heard about AnnaSophia's story, but if publicizing it helps encourage other families to draw closer to the Lord, then it was all worth it.
Steve and I also cannot possibly express how grateful we are the local community for all of their assistance through fundraisers for our little girl. We are amazed and blessed by the outpouring of concern and support for our family during this time. Thank you, thank you, thank you.
God Bless,
Mary
I have been surprised at the interest that has come about regarding AnnaSophia's story. Christina was very nice and made a tremendous effort to truly understand the facts surrounding our little one's life and struggles. The interview was to air tonight during the 9pm news. I have not seen the story, because I cannot get the Colorado Springs news up here, but I was told by some family members that the story was well done. Kudos to Christina Salvo for her hard work!
I can honestly say that I have a new appreciation for what Steve does for a living, because it was very hard for me not to feel silly in front of the camera. I had to be very concious about what I was saying, so as not to sound studid. I am not quite sure how Fox 21 heard about AnnaSophia's story, but if publicizing it helps encourage other families to draw closer to the Lord, then it was all worth it.
Steve and I also cannot possibly express how grateful we are the local community for all of their assistance through fundraisers for our little girl. We are amazed and blessed by the outpouring of concern and support for our family during this time. Thank you, thank you, thank you.
God Bless,
Mary
Sunday, August 17, 2008
Pure joy
2 My brothers and sisters, when you have many kinds of troubles, you should be full of joy, 3 because you know that these troubles test your faith, and this will give you patience.4 Let your patience show itself perfectly in what you do. Then you will be perfect and complete and will have everything you need.
James 1:1-4 NCV
This past winter, I had the privledge of attending a homeschool meeting, where author Kimberly Woodhouse was speaking. Her topic was homeschooling through various trials. In light of AnnaSophia's recent open heart surgery and subsequent hospitalizations, I thought that I just had to go to that meeting. She shared some of the trials that her family had gone through, and how they found that the Lord had seen them through. She shared a couple of bible verses that inspired her, and the above verse was one of them. I have held onto this verse through our journey with AnnaSophia and her heart issues. Sometimes it seems insane to be able to find joy in scary, out-of-control circumstances, but when you wait on the Lord, He can see you through even the most difficult of times.
This weekend can only be described as pure joy. Steve came up from Colorado Springs, and we were all together as a family. Simple things, such as breakfast together, with AnnaSophia on my lap, were pure joy. We are living very simply in an apartment here in Denver, but we are excited to have our own space to relax and not worry about germs. AnnaSophia seemed so content, like she knew that this was how our family is supposed to be--all together. Steve, Ethan, Emily and I enjoyed every little moment of cuteness that AnnaSophia displayed. I cannot express how thankful I am for our home away from home. I have been working on the story of how we came to find this apartment for the blog. It's complicated, but soooo cool, because God just took care of every little detail.
I believe that AnnaSophia's healing process is benefitted by having her entire family together. She seems so much happier, and she seems to be having more good days than bad. Saturday, she had trouble with vomiting and diarrhea, but today was a good day. Hopefully, her echo will show improvement tomorrow in clinic, and she will continue her upward trend. As we continue through this journey, I just pray that our family will continue to experience that special joy that is only found through our Lord and Savior Jesus Christ.
God Bless,
Mary
James 1:1-4 NCV
This past winter, I had the privledge of attending a homeschool meeting, where author Kimberly Woodhouse was speaking. Her topic was homeschooling through various trials. In light of AnnaSophia's recent open heart surgery and subsequent hospitalizations, I thought that I just had to go to that meeting. She shared some of the trials that her family had gone through, and how they found that the Lord had seen them through. She shared a couple of bible verses that inspired her, and the above verse was one of them. I have held onto this verse through our journey with AnnaSophia and her heart issues. Sometimes it seems insane to be able to find joy in scary, out-of-control circumstances, but when you wait on the Lord, He can see you through even the most difficult of times.
This weekend can only be described as pure joy. Steve came up from Colorado Springs, and we were all together as a family. Simple things, such as breakfast together, with AnnaSophia on my lap, were pure joy. We are living very simply in an apartment here in Denver, but we are excited to have our own space to relax and not worry about germs. AnnaSophia seemed so content, like she knew that this was how our family is supposed to be--all together. Steve, Ethan, Emily and I enjoyed every little moment of cuteness that AnnaSophia displayed. I cannot express how thankful I am for our home away from home. I have been working on the story of how we came to find this apartment for the blog. It's complicated, but soooo cool, because God just took care of every little detail.
I believe that AnnaSophia's healing process is benefitted by having her entire family together. She seems so much happier, and she seems to be having more good days than bad. Saturday, she had trouble with vomiting and diarrhea, but today was a good day. Hopefully, her echo will show improvement tomorrow in clinic, and she will continue her upward trend. As we continue through this journey, I just pray that our family will continue to experience that special joy that is only found through our Lord and Savior Jesus Christ.
God Bless,
Mary
Friday, August 15, 2008
Making progess and feeling better!
AnnaSophia is finally starting to feel good. We are so happy, and I hope that she will continue to have more good days than bad. Her medication levels continue to come back just where we need them to be, and she is able to stop some of her meds. This week, she had her last dose of Bactrim, aspirin and as of tonight, she can stop her Valgancyclovir. In the next two weeks she will come off of her Cellcept (which will be replaced by another drug), but we are making progress. By tomorrow morning, she will only be taking Neoral, Cellcept, Prevacid and Verapamil. That is such a change from the nine medications that she was orginally taking.
As AnnaSophia starts to feel better, she is making amazing progress developmentally. She is sitting up, rolling over, and attempting to push up on all fours. She continues to babble, and Ethan, Emily and I were stunned to hear her say mama the other day. She is very interested in her environment, and it will only be a matter of time before she is into everything.
Before her transplant, I never thought that I would see this day come. Even though I felt that the Lord had given us hope and promise for AnnaSophia, sometimes it is hard to see past the current day to day struggles. One thing I do know from all of this is that the Lord has grace for us. I rely on Him daily for strength. Sometimes people will say that they marvel at how strong Steve and I are. The reality is that we are both very weak, broken people, and the only way we cope is by the strength that the Lord has given us. We take each day moment by moment and never forget to give the praise where it is due. The Lord has worked a miracle in our little girl, and we are thankful for each moment we have with her.
Mary
He has given me a new song to sing,
a hymn of praise to our God.
Many will see what He has done and be amazed.
They will put their trust in the Lord.
Psalm 40:3 NLT
As AnnaSophia starts to feel better, she is making amazing progress developmentally. She is sitting up, rolling over, and attempting to push up on all fours. She continues to babble, and Ethan, Emily and I were stunned to hear her say mama the other day. She is very interested in her environment, and it will only be a matter of time before she is into everything.
Before her transplant, I never thought that I would see this day come. Even though I felt that the Lord had given us hope and promise for AnnaSophia, sometimes it is hard to see past the current day to day struggles. One thing I do know from all of this is that the Lord has grace for us. I rely on Him daily for strength. Sometimes people will say that they marvel at how strong Steve and I are. The reality is that we are both very weak, broken people, and the only way we cope is by the strength that the Lord has given us. We take each day moment by moment and never forget to give the praise where it is due. The Lord has worked a miracle in our little girl, and we are thankful for each moment we have with her.
Mary
He has given me a new song to sing,
a hymn of praise to our God.
Many will see what He has done and be amazed.
They will put their trust in the Lord.
Psalm 40:3 NLT
Sunday, August 10, 2008
Busy weekend, and AnnaSophia's struggles continue
Our apologies for the delay. The focus of this weekend was to get Mary and the kids moved into their new apartment in Denver, so that required a great deal of time and energy. We received a lot of help from my mom and dad, and some very good friends. We felt very blessed.
We were missing a dining room table for the apartment, but my in-laws were kind enough to take the trip up to Denver to drop off a table and set of chairs, and help out with groceries. Many thanks!
We've also had a change-of-service conflict with Mary's cell phone, so if you've been trying to reach her at that number, it's not going to work again until Monday or Tuesday of this week. Our apologies.
It was great for me and the kids to see AnnaSophia again this weekend. She was smiling and cooing almost all day on Saturday, and seemed to be doing pretty well. We even got to see AnnaSophia's new head bob routine when she gets really excited. It's the cutest darn thing and it reminded me of how precious her little life is to our family.
Here's a bit of bad news...I guess it took me leaving today for things to go downhill. About an hour after I left today, AnnaSophia started fussing, stopped eating, and vomited two or three times. Mary tells me AnnaSophia has been extremely irritable all day.
After a couple of calls into the on-call transplant coordinator today, the doctor's theory is that AnnaSophia may be having withdrawal symptoms from the steroids. Actually, that's great news if this is the cause, and not her heart. Please pray that AnnaSophia (along with Mary, Ethan and Emily) can avoid a late night visit to the ER, and that she is stable until her clinic appointment tomorrow. Also, pray that Mary gets some much-needed rest, and that Ethan and Emily make the transition to the apartment without major incident.
Finally, a special thanks to the owners of Smoothie King for their generous fund raiser today, and to our friends (Patrice, Janet, Rachel, Pastor Pat, Kimberly Woodhouse, etc.) for promoting the event.
Blessings,
Steve
We were missing a dining room table for the apartment, but my in-laws were kind enough to take the trip up to Denver to drop off a table and set of chairs, and help out with groceries. Many thanks!
We've also had a change-of-service conflict with Mary's cell phone, so if you've been trying to reach her at that number, it's not going to work again until Monday or Tuesday of this week. Our apologies.
It was great for me and the kids to see AnnaSophia again this weekend. She was smiling and cooing almost all day on Saturday, and seemed to be doing pretty well. We even got to see AnnaSophia's new head bob routine when she gets really excited. It's the cutest darn thing and it reminded me of how precious her little life is to our family.
Here's a bit of bad news...I guess it took me leaving today for things to go downhill. About an hour after I left today, AnnaSophia started fussing, stopped eating, and vomited two or three times. Mary tells me AnnaSophia has been extremely irritable all day.
After a couple of calls into the on-call transplant coordinator today, the doctor's theory is that AnnaSophia may be having withdrawal symptoms from the steroids. Actually, that's great news if this is the cause, and not her heart. Please pray that AnnaSophia (along with Mary, Ethan and Emily) can avoid a late night visit to the ER, and that she is stable until her clinic appointment tomorrow. Also, pray that Mary gets some much-needed rest, and that Ethan and Emily make the transition to the apartment without major incident.
Finally, a special thanks to the owners of Smoothie King for their generous fund raiser today, and to our friends (Patrice, Janet, Rachel, Pastor Pat, Kimberly Woodhouse, etc.) for promoting the event.
Blessings,
Steve
Friday, August 8, 2008
Yeah!!!!!!!!!!
Praise God, AnnaSophia's echo has improved a lot, and the team is very pleased. Her blood pressure has come down quite a bit too. AnnaSophia has smiled and smiled this morning and is like her old self. She is babbling and smiling at everyone, including strangers in the elevator. This is the true test on how she is feeling. She is just so content today, and happy as can be. Even her cyclosporine levels came back perfect. Hopefully, she will continue to improve with no more setbacks. Our three months up here officially started after her last dose of steroids. If she can continue to get better with no more rejections, we will be able to go home three months from now.
The other day we received a letter from AnnaSophia's donor's family. We were so blessed by the sweetness of the letter. AnnaSophia's donor was a sweet little boy who loved to share everything. In the tragedy of his passing, he was able to share one last thing, his heart. As this precious family was praying for us during the transplant process, we were praying for them. My hope is that they will be as blessed when they receive our letter as we were by theirs. God is so good, and we give Him all the praise and honor.
Mary
The other day we received a letter from AnnaSophia's donor's family. We were so blessed by the sweetness of the letter. AnnaSophia's donor was a sweet little boy who loved to share everything. In the tragedy of his passing, he was able to share one last thing, his heart. As this precious family was praying for us during the transplant process, we were praying for them. My hope is that they will be as blessed when they receive our letter as we were by theirs. God is so good, and we give Him all the praise and honor.
Mary
Subscribe to:
Posts (Atom)