Kennedy will be 15 months old in a week and just started to walk like a big girl. Larry said it was her Father's Day gift to him :-) She has been walking for 7 days now, and it hasn't gotten old yet. All of us are full of smiles every time she walks over to us. Kennedy is very proud of her achievement and has a huge grin on her face every time she walks around. It is the cutest thing ever!
She had her tubes put in a few months back, but still had a bad episode of the mysterious illness she's been struggling with since November. They were hoping that the tubes would stop them, but apparently there is another problem that noone can find. Her white blood cell count got up to 30 and all the doctors went into a panic testing for everything possible to diagnose why she keeps getting sick...but were unsuccessful with finding the cause.
We took her to see her surgeon at CNMC in DC earlier this month and asked him if he thought these illness's were related to her tumor and all the complications she had at birth. He has no idea why she keeps getting sick, but does not think it is related at all. He did a rectal exam to check on the growth of her current tumor and gave us the wonderful news that he could not feel the tumor. We did a blood test to check her AFP levels as well and they were 5.1---which is amazingly low!! Kennedy is finally TUMOR FREE and we couldn't be more happy. Dr. Powell said that either this tumor was mis-diagnosed over the past 2 MRI's and was just scar tissue....OR it was infact a tumor that has disappeared. Either way, everything is gone and he said that her gluteal area feels just like a normall butt. VERY VERY COOL!! Just another miracle from God.
Now...if we can just get her off the bottle! lol. She hates sippy cups and does not want to give up the nipple. If that is all we have to worry about, I think we are okay! :-)
Saturday, June 27, 2009
Friday, May 8, 2009
Post-Surgery Check Up
Kennedy's surgery went well and she has been feeling great ever since. Larry took her for her check up on Wednesday, and the Ear Nose and Throat Specialist said that her tubes are in place and lookin the way they are supposed to.
KNOCK ON WOOD, but none of us have been sick since she had her tubes put in. She was real congested the other night and has a little runny nose right now---but it is clear. I am just passing it off as a sign of teething.
Everything is wonderful right now, and our house isn't feeling as heavy to me (if that makes any sense to you). The energy is positive, and we are working through every challenge that God has for us. I cannot tell you how nice it is to have everyone cold free....especially myself! lol. Wow, how nice it is to be able to have a break from all that.
We pray that your life is going well for you too!
God Bless!
KNOCK ON WOOD, but none of us have been sick since she had her tubes put in. She was real congested the other night and has a little runny nose right now---but it is clear. I am just passing it off as a sign of teething.
Everything is wonderful right now, and our house isn't feeling as heavy to me (if that makes any sense to you). The energy is positive, and we are working through every challenge that God has for us. I cannot tell you how nice it is to have everyone cold free....especially myself! lol. Wow, how nice it is to be able to have a break from all that.
We pray that your life is going well for you too!
God Bless!
Friday, April 17, 2009
Upcoming Surgery
It has been a struggle to get the approval for this procedure, but Kennedy will finally be able to get tubes put in her ears. She has been very sick with double ear infections since November and she has been in pain ever since. We wanted the surgery to be done in Hagerstown instead of DC, and that has been a nightmare to get records transferred to the correct departments.
Kennedy was very sick for her birthday party and cried the whole time! The following week she was in the Pediatrician's office three times because of a 104.6 fever that we could not keep under control. Kaylee ended up getting Strep throat and Mono the same week! Larry and I started to feel sick, so we were given antibiotics as well.
Kennedy was back to her old self a few days ago, and we hadn't seen her that happy since October. You could tell that her ears weren't bothering her and she felt great. Unfortunately, she started vomiting and got a bad case of diarrhea yesterday! I am afraid she got a virus, but Larry is hoping it was bad food or something. If she gets sick again, the surgery will have to be cancelled----AND WE DON'T WANT THAT!!
So her surgery is scheduled for this Monday. We are trying to keep fluids in her and monitor her temperature right now. I hope Larry is right and maybe she ate something that was bad....but I have a feeling it is a virus. Help us with prayer over the next few days that she is well enough for the surgery that she desperately needs.
Kennedy was very sick for her birthday party and cried the whole time! The following week she was in the Pediatrician's office three times because of a 104.6 fever that we could not keep under control. Kaylee ended up getting Strep throat and Mono the same week! Larry and I started to feel sick, so we were given antibiotics as well.
Kennedy was back to her old self a few days ago, and we hadn't seen her that happy since October. You could tell that her ears weren't bothering her and she felt great. Unfortunately, she started vomiting and got a bad case of diarrhea yesterday! I am afraid she got a virus, but Larry is hoping it was bad food or something. If she gets sick again, the surgery will have to be cancelled----AND WE DON'T WANT THAT!!
So her surgery is scheduled for this Monday. We are trying to keep fluids in her and monitor her temperature right now. I hope Larry is right and maybe she ate something that was bad....but I have a feeling it is a virus. Help us with prayer over the next few days that she is well enough for the surgery that she desperately needs.
Monday, March 30, 2009
One Year Old
Wow....I just can't believe it! Kennedy is going to be one year old this Thursday and it is hard to grasp it. Her birthday crept up on us, and we didn't have enough time to plan a big party. As much as I wanted to shout to the world, rent out a place, and invite tons of people to celebrate her life with us...it would be way out of our budget. The place I wanted to have her party would have cost $150 and then we would have to get food, decorations, etc.
We decided to have a small party with family and just a few close friends this weekend. It is in our price range, and the most expensive part of the party will be her cake. I want to make the cake...and being that I am still in the beginning stages of being a cake decorator, buying the pans and all the Wilton stuff isn't cheap.
We are so excited to celebrate her birthday, and I can't wait to see if she tears into her cake. Kaylee was scared to touch her cake when she turned one because I would never let her get dirty. I had to take her hand and smash it in the cake! Kennedy is more assertive than she was, so I have a feeling she will not have any problems making a mess.
We decided to have a small party with family and just a few close friends this weekend. It is in our price range, and the most expensive part of the party will be her cake. I want to make the cake...and being that I am still in the beginning stages of being a cake decorator, buying the pans and all the Wilton stuff isn't cheap.
We are so excited to celebrate her birthday, and I can't wait to see if she tears into her cake. Kaylee was scared to touch her cake when she turned one because I would never let her get dirty. I had to take her hand and smash it in the cake! Kennedy is more assertive than she was, so I have a feeling she will not have any problems making a mess.
Sunday, February 22, 2009
Correction in journal story
Here is the link for the story in the journal.
http://www.journal-news.net/page/content.detail/id/515973.html?actionAlert=emailcontent
Overall, I think that the editor did a great job on Kennedy's update. Apparently she must have used pieces of the previous story on Kennedy in 2008...which made some information inaccurate.
Just to make it clear, we DO NOT have $300,000 in medical debt for Kennedy. I flipped out when the first editor put that in the paper...and was totally surprised to see it in today's paper. WE HAVE INSURANCE, and they have been slowly paying their portion of Kennedy's bills.
So.....we DO NOT have $300,000 in medical bills.
Just wanted to clear that up :-)
To see more pictures of Kennedy, go to www.babyruffner.blogspot.com
http://www.journal-news.net/page/content.detail/id/515973.html?actionAlert=emailcontent
Overall, I think that the editor did a great job on Kennedy's update. Apparently she must have used pieces of the previous story on Kennedy in 2008...which made some information inaccurate.
Just to make it clear, we DO NOT have $300,000 in medical debt for Kennedy. I flipped out when the first editor put that in the paper...and was totally surprised to see it in today's paper. WE HAVE INSURANCE, and they have been slowly paying their portion of Kennedy's bills.
So.....we DO NOT have $300,000 in medical bills.
Just wanted to clear that up :-)
To see more pictures of Kennedy, go to www.babyruffner.blogspot.com
Wednesday, February 4, 2009
Farewell JR
The community showed their respects to the family as we buried JR yesterday. For me, the viewing was difficult...but seeing his casket closed at the funeral and knowing that it would never be opened again was very hard for me. Natalie (JR's wife) chose three beautiful songs to be played and they couldn't have been more perfect for him.
For those of you who had the honor of knowing JR, please remember and cherish all the good times you shared with him. JR and I were good friends in college and stayed in touch after we graduated by chatting at the gym whenever we saw each other. There was never a dull moment with him, and I have so many hilarious memories of things we did together. Don't harp on the difficult struggles he had with cancer and the heartache he must have felt through it all. He would not want us to relive that emotional pain.
Last night, Larry and I spent the evening reflecting on all the good times we had with JR. We laughed... we cried... and it helped us heal from the loss. I was able to talk to Larry about my emotions and the guilt I was feeling about his death. We were able to help one another deal with unanswered questions. I felt uplifted afterwards, and I think we both felt at peace with knowing that JR is now in Heaven and no longer in pain.
There is one huge aspect of life that JR's passing should remind all of us. Don't take anything for granted. If someone would've told JR that his life would end at 30 years old, he wouldn't have believed them. None of us have a guarantee that we will live to an old age. As a police officer's wife, I have learned to cherish every moment I have with my husband because every time he goes to work, it may be the last time I get to give him a kiss. But what if my time comes before his? Have I lived my life to the fullest? Have you?
I will close with this: If you perished tomorrow, would you have any regrets about your life? Would you be proud of your accomplishments? Have you been a good parent, a good spouse, a good samaritan? Have you lived your life the way Christ would want you to? Do you have Christ in your heart? Will you leave a legacy that your children will be proud of? I'm sure JR thought of these questions before his death, and I know that he stood tall when he entered through the gates of Heaven. I pray that each of us will be able to stand as tall as he did when our time comes.
God Bless
For those of you who had the honor of knowing JR, please remember and cherish all the good times you shared with him. JR and I were good friends in college and stayed in touch after we graduated by chatting at the gym whenever we saw each other. There was never a dull moment with him, and I have so many hilarious memories of things we did together. Don't harp on the difficult struggles he had with cancer and the heartache he must have felt through it all. He would not want us to relive that emotional pain.
Last night, Larry and I spent the evening reflecting on all the good times we had with JR. We laughed... we cried... and it helped us heal from the loss. I was able to talk to Larry about my emotions and the guilt I was feeling about his death. We were able to help one another deal with unanswered questions. I felt uplifted afterwards, and I think we both felt at peace with knowing that JR is now in Heaven and no longer in pain.
There is one huge aspect of life that JR's passing should remind all of us. Don't take anything for granted. If someone would've told JR that his life would end at 30 years old, he wouldn't have believed them. None of us have a guarantee that we will live to an old age. As a police officer's wife, I have learned to cherish every moment I have with my husband because every time he goes to work, it may be the last time I get to give him a kiss. But what if my time comes before his? Have I lived my life to the fullest? Have you?
I will close with this: If you perished tomorrow, would you have any regrets about your life? Would you be proud of your accomplishments? Have you been a good parent, a good spouse, a good samaritan? Have you lived your life the way Christ would want you to? Do you have Christ in your heart? Will you leave a legacy that your children will be proud of? I'm sure JR thought of these questions before his death, and I know that he stood tall when he entered through the gates of Heaven. I pray that each of us will be able to stand as tall as he did when our time comes.
God Bless
Sunday, January 25, 2009
Prayer Request
Please join me in prayer for the Butcher family. We were informed that the doctors are giving JR four to six weeks to live. He is not feeling any pain because they have him on a bunch of medication to help him rest. Unfortunately his brain cancer has consumed his body, and the doctors have done everything they can to keep it under control. JR has always been a fighter, and there is no doubt in my mind that he will continue to fight until he takes his last breath.
Pray that God will continue to hold him close. If the time must come that JR has to leave us, I pray that his spirit leaves his body in a peaceful and painless manner. Even though we may lose him in the physical being, he will never leave our hearts. I am still praying for a miracle because God can do the impossible! A part of me knows that I have to come to terms with JR living out his last days, and it definitely pulls at my heart.
Thank you for all your prayers!
Pray that God will continue to hold him close. If the time must come that JR has to leave us, I pray that his spirit leaves his body in a peaceful and painless manner. Even though we may lose him in the physical being, he will never leave our hearts. I am still praying for a miracle because God can do the impossible! A part of me knows that I have to come to terms with JR living out his last days, and it definitely pulls at my heart.
Thank you for all your prayers!
LATEST MRI RESULTS
We have been patiently waiting on the results of the MRI Kennedy had a few weeks ago. The surgeon called us a few days ago and left us a message with good news! Now, we have yet to speak to him...but the voicemail he left said that the tumor is getting smaller!! WOOHOO! Praise God!
I will update the blog as soon as we are able to speak with the doctor more and get all the details. He mentioned that he met with the Tumor Board at Children's and they have created plan on how to monitor the tumor....and it doesn't involve anymore MRI's!!!
I will update the blog as soon as we are able to speak with the doctor more and get all the details. He mentioned that he met with the Tumor Board at Children's and they have created plan on how to monitor the tumor....and it doesn't involve anymore MRI's!!!
Saturday, December 27, 2008
Busy Busy Busy
Wow, I don't know about you...but our lives have been so busy the past couple of months!!! I barely remember the month of December because things were so hectic and I was too busy running around like a crazy woman. Today was the first day I have been able to sit down, stare at the walls, and do absolutely nothing since probably the week before Thanksgiving!!
Kennedy ended up catching a cold the Tuesday before Thanksgiving, and we have been at the pediatrician's office at least 10-15 times since then. From antibiotic injections, double ear infections, to drawing blood for possible blood poisoning, to breathing treatments....you name it, she has been through it. To add to it, everyone in the house ended up getting sick from her! Kennedy just could not shake the sickness and the doctors were baffled. Larry figured it up, and we spent over $300 in her medication and co pays in less than a month! She just had a follow up appointment on Christmas Eve and they said she needs to see an ear, nose, and throat specialist because she still has fluid behind her ears after a month of treatment.
Kaylee and I were involved with our church's Christmas production, and that seemed to engulf so much of our time. So while we were tending to a very sick baby, fighting off our own colds, and trying to prepare for Christmas at our home....we were also memorizing lyrics, shopping for stage attire, learning choreography, and making sure everything was ready for the production. Kaylee and I ended up getting really sick the week before the show, and the doctor put me on 5 different medications. We were both holding on to the little bit of voices we had left...and I think we did the best we could with our performances (considering our health). The Christmas Experience was a huge success, and the community packed the Apollo to share in the joy that Christmas brings to us. Kaylee rocked her solo in the kids choir with her scratchy voice, and I cried every time she sang it. I was so proud of her!!
We finally had the time to put our tree up two days before Christmas, and even went to get family pictures taken on Christmas Eve...lol. Talk about last minute, but we fit it all in just in time! Yeah it was way too crazy, and at times I was very stressed out...but we were still able to enjoy family time on Christmas day. I will not let our lives get that crazy again, because I had a pretty bad meltdown in front of some friends...and I can't let myself get to that point again. I think it was just everything hitting us at once, and then dealing with all of us being sick really wore our bodies out.
We feel better now, and we are eager to see what 2009 has for us! I am confident that God has so many wonderful things planned and we are excited to live out everyday the way He wants us to! Kennedy will be getting another MRI on January 7th at Children's Hospital to check the status of her tumor, and we know that we will have great results. So help us in prayer for the tumor to be either the same size or shrinking. Heck, pray that it has disappeared because we know all things are possible with God!!!
Kennedy ended up catching a cold the Tuesday before Thanksgiving, and we have been at the pediatrician's office at least 10-15 times since then. From antibiotic injections, double ear infections, to drawing blood for possible blood poisoning, to breathing treatments....you name it, she has been through it. To add to it, everyone in the house ended up getting sick from her! Kennedy just could not shake the sickness and the doctors were baffled. Larry figured it up, and we spent over $300 in her medication and co pays in less than a month! She just had a follow up appointment on Christmas Eve and they said she needs to see an ear, nose, and throat specialist because she still has fluid behind her ears after a month of treatment.
Kaylee and I were involved with our church's Christmas production, and that seemed to engulf so much of our time. So while we were tending to a very sick baby, fighting off our own colds, and trying to prepare for Christmas at our home....we were also memorizing lyrics, shopping for stage attire, learning choreography, and making sure everything was ready for the production. Kaylee and I ended up getting really sick the week before the show, and the doctor put me on 5 different medications. We were both holding on to the little bit of voices we had left...and I think we did the best we could with our performances (considering our health). The Christmas Experience was a huge success, and the community packed the Apollo to share in the joy that Christmas brings to us. Kaylee rocked her solo in the kids choir with her scratchy voice, and I cried every time she sang it. I was so proud of her!!
We finally had the time to put our tree up two days before Christmas, and even went to get family pictures taken on Christmas Eve...lol. Talk about last minute, but we fit it all in just in time! Yeah it was way too crazy, and at times I was very stressed out...but we were still able to enjoy family time on Christmas day. I will not let our lives get that crazy again, because I had a pretty bad meltdown in front of some friends...and I can't let myself get to that point again. I think it was just everything hitting us at once, and then dealing with all of us being sick really wore our bodies out.
We feel better now, and we are eager to see what 2009 has for us! I am confident that God has so many wonderful things planned and we are excited to live out everyday the way He wants us to! Kennedy will be getting another MRI on January 7th at Children's Hospital to check the status of her tumor, and we know that we will have great results. So help us in prayer for the tumor to be either the same size or shrinking. Heck, pray that it has disappeared because we know all things are possible with God!!!
Friday, November 21, 2008
Children's Fundraiser
Check out www.babyruffner.blogspot.com to see the fundraiser that Katie's Salon is holding for Kennedy. They are doing a CUT-A-THON for children's haircuts and 100% of the proceeds go to Kennedy.
Thanks!!!
Thanks!!!
Friday, November 7, 2008
Our day at Children's Hospital
I had been waiting for November 5th to come ever since her MRI in October, and my heart was pounding the whole day in anticipation of hearing the results. We had her Cardiology appointment first before we went to see the Pediatric Surgeon. I was looking forward to seeing both departments...but I really wanted to see the surgeon.
The Cardiologist was amazing and he did a complete run through with Kennedy. Our concerns with her heart were two small ASDs and a PDA. Basically, she had two small holes in her heart and a "tube" that never closed that was allowing blood to go the wrong way in her heart. After an EKG and an ultrasound, Dr. Cockerham came back in and said that she had completely healed herself! That was the best news in the world, and we praised God for giving us the results we wanted. Of course he told me that there might be a one in a million chance that her PDA is so small and inaudible that he could've misdiagnosed her....but he was very confident that it was gone. We'll take it!
Once we went up to the 4th floor, we had to wait a long time because we were late for our scheduled appointment. Once Dr. Burd came in to talk to us...he was totally clueless on why we were there. He thought we were just doing a post surgery follow up from her surgery back in April!!! Apparently, no one from Radiology sent him up the MRI and there was no communication between the departments. He was very apologetic, and I knew it wasn't his fault. I was still upset because we left there knowing more than he did. He did give her a rectal exam, and she took it like a champ! He said that he did not feel a tumor when he did the rectal exam, but he needed to view the MRI. We did agree that she needed her AFP(alpha feta protein) levels checked, so we headed to the lab to get her blood taken. He promised me that he would track down everything and call me either Thursday or Friday. He also told us that Dr. Powell was Kennedy's surgeon, but we had always been told it was Dr. Kanard. It turns out Dr. Kanard was the fellow (resident) and Dr. Powell as the main surgeon. So Dr. Burd was going to meet with Dr. Powell and review her file with him as well.
The phlebotomist could not get a blood sample from Kennedy's arm, and my baby screamed her head off. I stood out in the hallway because I knew I wouldn't be able to watch her be upset like that. Now, Kennedy has been very congested the past few days, so I handed Larry a tissue before they sat her down. Larry said she blew snot all over the place and that tissue was covered!! They ended up getting another nurse to try to get a blood sample from her other arm, and Kennedy was hyperventilating from being held down and poked with needles so long. When Larry and Kennedy came out, I had to get more tissues out to clean off her face from the mucus. Then I looked up and saw that Larry had green snot all over his cheek! lol. She had slimed him! lol lol. She cleaned herself out, that's for sure!!
I got to see Paula and Kathy from Concierge and they gave us some meal tickets so we could eat. We had not eaten all day, and finally sat down to eat something at 5 pm. We hit major traffic once we left, and it took us 3 hours to get home. It was a long exhausting day, but we were really happy about the results we got from Cardiology.
UPDATE!
Dr. Burd called me and said that yes there is a tumor, but it is 9 mm in diameter. It is between her rectum and her sacrum and he was not able to feel it because it was so small and blended with her scar tissue. He told Dr. Powell about our visit, and Dr. Powell wanted to know why we didn't schedule to see him. We didn't know who he was, and we just went with whomever the department set us up with...but Dr. Powell wants to see us from now on.
They viewed the MRI together and weighed out our options for removal of the teratoma. There is a huge risk with removing this teratoma because of the location. If they chose to go in and remove it, they could mess up her continence and give her a lifetime of troubles. That means that they could cut or destroy her muscle structure in her rectum and she would have major difficulties with passing bowel movements.
We are tracking down her previous AFP levels to compare them to the results from Wednesday, and then we will create an action plan from there. All of us agree that the risk is too high to remove the teratoma at this time. Instead, we will be doing interval MRI's to monitor the growth of it.
So overall, we are happy with our situation right now. God is keeping an eye out for Kennedy, and he is helping us with every step. Kennedy is a really happy baby, and we know she is going to be okay.
The Cardiologist was amazing and he did a complete run through with Kennedy. Our concerns with her heart were two small ASDs and a PDA. Basically, she had two small holes in her heart and a "tube" that never closed that was allowing blood to go the wrong way in her heart. After an EKG and an ultrasound, Dr. Cockerham came back in and said that she had completely healed herself! That was the best news in the world, and we praised God for giving us the results we wanted. Of course he told me that there might be a one in a million chance that her PDA is so small and inaudible that he could've misdiagnosed her....but he was very confident that it was gone. We'll take it!
Once we went up to the 4th floor, we had to wait a long time because we were late for our scheduled appointment. Once Dr. Burd came in to talk to us...he was totally clueless on why we were there. He thought we were just doing a post surgery follow up from her surgery back in April!!! Apparently, no one from Radiology sent him up the MRI and there was no communication between the departments. He was very apologetic, and I knew it wasn't his fault. I was still upset because we left there knowing more than he did. He did give her a rectal exam, and she took it like a champ! He said that he did not feel a tumor when he did the rectal exam, but he needed to view the MRI. We did agree that she needed her AFP(alpha feta protein) levels checked, so we headed to the lab to get her blood taken. He promised me that he would track down everything and call me either Thursday or Friday. He also told us that Dr. Powell was Kennedy's surgeon, but we had always been told it was Dr. Kanard. It turns out Dr. Kanard was the fellow (resident) and Dr. Powell as the main surgeon. So Dr. Burd was going to meet with Dr. Powell and review her file with him as well.
The phlebotomist could not get a blood sample from Kennedy's arm, and my baby screamed her head off. I stood out in the hallway because I knew I wouldn't be able to watch her be upset like that. Now, Kennedy has been very congested the past few days, so I handed Larry a tissue before they sat her down. Larry said she blew snot all over the place and that tissue was covered!! They ended up getting another nurse to try to get a blood sample from her other arm, and Kennedy was hyperventilating from being held down and poked with needles so long. When Larry and Kennedy came out, I had to get more tissues out to clean off her face from the mucus. Then I looked up and saw that Larry had green snot all over his cheek! lol. She had slimed him! lol lol. She cleaned herself out, that's for sure!!
I got to see Paula and Kathy from Concierge and they gave us some meal tickets so we could eat. We had not eaten all day, and finally sat down to eat something at 5 pm. We hit major traffic once we left, and it took us 3 hours to get home. It was a long exhausting day, but we were really happy about the results we got from Cardiology.
UPDATE!
Dr. Burd called me and said that yes there is a tumor, but it is 9 mm in diameter. It is between her rectum and her sacrum and he was not able to feel it because it was so small and blended with her scar tissue. He told Dr. Powell about our visit, and Dr. Powell wanted to know why we didn't schedule to see him. We didn't know who he was, and we just went with whomever the department set us up with...but Dr. Powell wants to see us from now on.
They viewed the MRI together and weighed out our options for removal of the teratoma. There is a huge risk with removing this teratoma because of the location. If they chose to go in and remove it, they could mess up her continence and give her a lifetime of troubles. That means that they could cut or destroy her muscle structure in her rectum and she would have major difficulties with passing bowel movements.
We are tracking down her previous AFP levels to compare them to the results from Wednesday, and then we will create an action plan from there. All of us agree that the risk is too high to remove the teratoma at this time. Instead, we will be doing interval MRI's to monitor the growth of it.
So overall, we are happy with our situation right now. God is keeping an eye out for Kennedy, and he is helping us with every step. Kennedy is a really happy baby, and we know she is going to be okay.
Thanks for staying posted!
Tuesday, October 28, 2008
Pumpkin Patch
I surprised Kaylee and took her to Jumbo's Pumpkin Patch in Middletown on Sunday. Larry had to work, so I took both the girls out into the country to enjoy a nice evening together. The drive there was peaceful and so beautiful.
Once we got to the farm, Kaylee was completely shocked that I took her there. We have been talking about going as a family, but Larry has been working a lot of overtime and has been either working or sleeping when we had the opportunity to go. We wanted to go on Saturday, but ended up getting rained out. I really wanted to take Kaylee to a pumpkin patch and have those memories for her to hold on to. The only other time we have ever gone to a pumpkin patch was for her kindergarten field trip. That is a sad thing to admit to, and I didn't want her to miss out on the experience any longer.
I took a bunch of pictures and they both had a blast. Kennedy got cranky on the ride back to the farm from the pumpkin patch, but calmed down once she got her bottle. Over all, it was a fun-filled evening and I am so glad I made the decision to take them. Kaylee begged me to go in the corn maze, but they told me that it was not stroller friendly...and I was not going to attempt to carry Kennedy through a maze that I could get lost in. Maybe Larry and I can get a sitter one night for Kennedy and find a local corn maze to go to.
Once we got to the farm, Kaylee was completely shocked that I took her there. We have been talking about going as a family, but Larry has been working a lot of overtime and has been either working or sleeping when we had the opportunity to go. We wanted to go on Saturday, but ended up getting rained out. I really wanted to take Kaylee to a pumpkin patch and have those memories for her to hold on to. The only other time we have ever gone to a pumpkin patch was for her kindergarten field trip. That is a sad thing to admit to, and I didn't want her to miss out on the experience any longer.
I took a bunch of pictures and they both had a blast. Kennedy got cranky on the ride back to the farm from the pumpkin patch, but calmed down once she got her bottle. Over all, it was a fun-filled evening and I am so glad I made the decision to take them. Kaylee begged me to go in the corn maze, but they told me that it was not stroller friendly...and I was not going to attempt to carry Kennedy through a maze that I could get lost in. Maybe Larry and I can get a sitter one night for Kennedy and find a local corn maze to go to.
Friday, October 17, 2008
MRI at Children's Hospital in DC
Larry and I made the early drive to Children's National Medical Center on Wednesday morning for Kennedy's MRI. Neither of us could sleep the night before, and we both had horrible headaches when we woke up. Our nerves were getting the best of us, and we were just praying for the best outcome possible.
I was more concerned about the anesthesia than I was of the results. Looking back on it now, I think that was something I didn't really need to worry about. Kennedy was a trooper the whole morning. She was smiling at everyone and kicking her little legs with excitement. Her cheerful mood helped us keep our spirits high and kept us laughing while we were waiting on the anesthesiologist.
They gave her a little orange medical gown that was so cute on her. The doctor made her as comfortable as possible and we were able to hold her hands and talk to her until the laughing gas kicked in. They had us leave before they put the IV in her foot and told us that she would be done in about an hour.
We were able to go back into the recovery room and hold her while she woke up. She had to fast before the test, so she was crying for some food as soon as she woke up. Our friends from Concierge came in to check on her and it was so great being able to share that moment with them. Once Kennedy ate a little, she did her best to give everyone a groggy smile. You could tell she was still very loopy, and it made her smiles even more special.
Children's hospital told us that we would not know anything for about a week and someone would call us with the results. They gave us a CD of the pictures they took, so we popped it in our computer as soon as we got home to see if we could find a tumor. Needless to say, we didn't have a clue what we were doing...and we weren't sure what was scar tissue and what was a tumor. They used contrast during the MRI, which is a dye that helps the test be read, so the colors were different as well.
Yesterday, Paula from Concierge called me and she said she spoke to the doctor that read Kennedy's MRI. The doctor told her that there is definitely something there, but there is still more analysis that needs to be done. They want us to go back to DC so the doctors can explain things in more detail. I'm not going to lie, my heart dropped when Paula told me that she still has a tumor; however, we are thankful that she is going to set us up with the best doctors there. Kennedy also needs to see a cardiologist about her heart issues and lower body circulation problems, so Paula is going to cancel our appointment that we already have set up and move all the appointments to one day so Larry doesn't have to miss a whole lot of work.
Larry is worrying himself to death, and I reminded him to stay calm and to keep his trust in God. We have come so far in this adventure, and this is just a little bump in the road. She is a warrior and I know she will continue to win these battles.
Psalm 119:50 says "Your promise revives me; it comforts me in all my troubles"
I was more concerned about the anesthesia than I was of the results. Looking back on it now, I think that was something I didn't really need to worry about. Kennedy was a trooper the whole morning. She was smiling at everyone and kicking her little legs with excitement. Her cheerful mood helped us keep our spirits high and kept us laughing while we were waiting on the anesthesiologist.
They gave her a little orange medical gown that was so cute on her. The doctor made her as comfortable as possible and we were able to hold her hands and talk to her until the laughing gas kicked in. They had us leave before they put the IV in her foot and told us that she would be done in about an hour.
We were able to go back into the recovery room and hold her while she woke up. She had to fast before the test, so she was crying for some food as soon as she woke up. Our friends from Concierge came in to check on her and it was so great being able to share that moment with them. Once Kennedy ate a little, she did her best to give everyone a groggy smile. You could tell she was still very loopy, and it made her smiles even more special.
Children's hospital told us that we would not know anything for about a week and someone would call us with the results. They gave us a CD of the pictures they took, so we popped it in our computer as soon as we got home to see if we could find a tumor. Needless to say, we didn't have a clue what we were doing...and we weren't sure what was scar tissue and what was a tumor. They used contrast during the MRI, which is a dye that helps the test be read, so the colors were different as well.
Yesterday, Paula from Concierge called me and she said she spoke to the doctor that read Kennedy's MRI. The doctor told her that there is definitely something there, but there is still more analysis that needs to be done. They want us to go back to DC so the doctors can explain things in more detail. I'm not going to lie, my heart dropped when Paula told me that she still has a tumor; however, we are thankful that she is going to set us up with the best doctors there. Kennedy also needs to see a cardiologist about her heart issues and lower body circulation problems, so Paula is going to cancel our appointment that we already have set up and move all the appointments to one day so Larry doesn't have to miss a whole lot of work.
Larry is worrying himself to death, and I reminded him to stay calm and to keep his trust in God. We have come so far in this adventure, and this is just a little bump in the road. She is a warrior and I know she will continue to win these battles.
Psalm 119:50 says "Your promise revives me; it comforts me in all my troubles"
Monday, October 6, 2008
Touching Email
Well, I got an email on babyruffner@yahoo.com the other day and it made Larry and I feel so great about our decision to create this blog. The email was from a mom of another SCT survivor, and she thanked us for helping her through her emotions with what she was going through with her newborn. She was able to find our blog on the internet while she was searching for information about SCT's.
I got online this morning to respond back to her email, and I accidentally deleted it!!! What makes it even worse is Yahoo put the email in the SPAM folder for some reason, so when I accidentally hit delete...it erased it forever!!! I searched through all the Yahoo options and everything said that there was no way to retrieve the email. I was so mad at myself, and couldn't believe that I did that!
Larry and I have said from the beginning that Kennedy is on this Earth to bless so many people, and that email just reinforces our beliefs. When people meet Kennedy and hear her story, many are moved to tears. I am easily choked up, so most of time I will cry with them. Those tears for us, are tears of joy because she is so awesome and we are so blessed to have her with us. We really feel that she has changed many people's lives and showed them how special life is, and we are thankful for that.
So for the person's email that I lost, I would love to hear from you again. I promise, I will save your email address as soon as I get it! :-)
I got online this morning to respond back to her email, and I accidentally deleted it!!! What makes it even worse is Yahoo put the email in the SPAM folder for some reason, so when I accidentally hit delete...it erased it forever!!! I searched through all the Yahoo options and everything said that there was no way to retrieve the email. I was so mad at myself, and couldn't believe that I did that!
Larry and I have said from the beginning that Kennedy is on this Earth to bless so many people, and that email just reinforces our beliefs. When people meet Kennedy and hear her story, many are moved to tears. I am easily choked up, so most of time I will cry with them. Those tears for us, are tears of joy because she is so awesome and we are so blessed to have her with us. We really feel that she has changed many people's lives and showed them how special life is, and we are thankful for that.
So for the person's email that I lost, I would love to hear from you again. I promise, I will save your email address as soon as I get it! :-)
Monday, September 22, 2008
Kaylee's 8th Birthday
Kaylee celebrated her birthday this past weekend with a handful of family and friends. She said that it was the most fun she has had in a long time. This year, I wanted to make her birthday extra special by making her cake. I have never decorated a cake like that before, so I was a little nervous about it. I must brag though, it was very beautiful. The cake pan was a lot smaller than I thought it would be, so I made the "Hannah Montana" guitar cake in a French Vanilla flavor, and then I made chocolate cupcakes to accent the cake. I was very proud of myself I must say!!! I ran around and played like a crazy woman at her party and it made me feel like a kid again. I was afraid of how I would feel the next morning, but surprisingly I wasn't sore at all!!! Fun times!!
Kennedy is doing very well and getting so big. She is currently fighting off a little cold, but nothing that is going to be a big deal. If I had to guess, I would say she is around 14 pounds or so now. Stage one baby food has been introduced slowly....and so far she has only broken out in a rash from peaches. We have tried applesauce, bananas, pears, peaches, and this week is sweet potatoes.
We have an MRI appointment scheduled for October 15th for Kennedy, but I am still trying to get her cardiology appointment made so we can check her circulation in her legs and feet. I have been pulling teeth out trying to get this appointment...but it is easier said than done! lol. It will happen, it is just not knowing when that frustrates me! :-)
Kennedy is doing very well and getting so big. She is currently fighting off a little cold, but nothing that is going to be a big deal. If I had to guess, I would say she is around 14 pounds or so now. Stage one baby food has been introduced slowly....and so far she has only broken out in a rash from peaches. We have tried applesauce, bananas, pears, peaches, and this week is sweet potatoes.
We have an MRI appointment scheduled for October 15th for Kennedy, but I am still trying to get her cardiology appointment made so we can check her circulation in her legs and feet. I have been pulling teeth out trying to get this appointment...but it is easier said than done! lol. It will happen, it is just not knowing when that frustrates me! :-)
Monday, September 1, 2008
Benefits for Kennedy
I updated the fundraiser blog with all the details for the benefits that are being held for Kennedy in the month of September. We are so thankful that there are people holding these events for Kennedy!
God continues to surprise us with blessings--from people giving us baby formula and gently used baby items....all the way to people holding benefits for us.
Fri, Sept 26th: Basket Bingo @ Moose Lodge in Martinsburg
Thur, Oct 2nd: Chick-Fil-A between 5-8 pm (Say you are there for Baby Ruffner and they will donate 20% of their profit)
God continues to surprise us with blessings--from people giving us baby formula and gently used baby items....all the way to people holding benefits for us.
Fri, Sept 26th: Basket Bingo @ Moose Lodge in Martinsburg
Thur, Oct 2nd: Chick-Fil-A between 5-8 pm (Say you are there for Baby Ruffner and they will donate 20% of their profit)
Friday, August 29, 2008
Sick follow-up appointment
Larry took Kennedy for her check up appointment the other day to make sure her white blood cell count is where it should be. The doctor said that everything looked good and that she no longer needed to take her medication.
We noticed that her skin was starting to get rough, and she screamed when we tried to put lotion on it because of the perfumes in it. We weren't sure if she was having a reaction to her rice cereal because that was the only new thing that has been introduced to her. I have been keeping baby oil gel on her body, which seemed to help it a little...but I wanted Larry to say something to the doctor. He did prescribe a cream for her body rash. He did not think it was an allergic reaction to her rice cereal because it was isolated on certain parts of her body rather than all over. He also gave us an instant rebate coupon for the prescription so we would not have to pay for it. BONUS!
She gave Larry a belly laugh yesterday for the first time. I was picking Kaylee up from gymnastics, so I missed it. I was so jealous, but I know that I will get plenty of belly laughs in time. I am so excited about it!
We noticed that her skin was starting to get rough, and she screamed when we tried to put lotion on it because of the perfumes in it. We weren't sure if she was having a reaction to her rice cereal because that was the only new thing that has been introduced to her. I have been keeping baby oil gel on her body, which seemed to help it a little...but I wanted Larry to say something to the doctor. He did prescribe a cream for her body rash. He did not think it was an allergic reaction to her rice cereal because it was isolated on certain parts of her body rather than all over. He also gave us an instant rebate coupon for the prescription so we would not have to pay for it. BONUS!
She gave Larry a belly laugh yesterday for the first time. I was picking Kaylee up from gymnastics, so I missed it. I was so jealous, but I know that I will get plenty of belly laughs in time. I am so excited about it!
Sunday, August 17, 2008
4 Month Check-Up
Kennedy went for her 4 month "well check-up" appointment on Thursday. She was feeling great and the doctor was very happy with her progress. She was due for 4 shots, and was not happy when the nurse administered them to her. We talked about introducing rice cereal and how much to give her daily. I am excited about the rice cereal so she will not be hungry as often as she is right now.
She weighed 12 lbs 3.4 ounces and was 25 inches long. We just can't believe how big she is getting. It wasn't that long ago when I was holding a 4 1/2 pound baby in my arms! Her cheeks keep getting bigger and her legs are getting rolls on them....it is so cute!
Dr. Weneck did say that he wants to get an MRI done to check the status of the small teratoma that she still "supposedly" has. We also need to see a cardiologist to check the circulation in her legs. Her little feet are always cold and have a purple tint to them. Sometimes they are a dark tint of purple and other times they will be pink. So hopefully everything will be okay, but we need to cover our tracks and make sure that everything is working properly.
Kennedy slept through the night for the first time Thursday night! However, when we woke up Friday morning, I knew that something was wrong with Kennedy. She was extremely congested and had very glassy eyes. During her morning bottle, she ended up vomiting and then choking on her vomit because she could not breathe through her nose. We immediately called the doctor and he said to come in. They took her blood and the results showed an infection. He wrote out a prescription for her to start on, and said to come in Saturday morning for a follow-up.
We started her on the meds and she slept most of Friday evening. We let her sleep as much as she wanted so she could heal her body. I woke her up for her medication and to feed her before we went to bed, and she had no problems going back to sleep in her bassinet for the night. Starting to feel better.....she woke up for her usual 5:00 a.m. bottle! :)
Her blood was tested Saturday morning and it showed that her white blood cell count was going down, and that the medication was helping her. We are supposed to go back in 10 days to make sure the infection is gone. She is smiling again, and back to being her adorable self! Dr. Weneck thinks that she was fighting off the infection prior to the shots on Thursday...but the shots made her vulnerable for the infection to take over.
We will keep you posted on Kennedy! She is feeling a whole lot better and is almost back to normal.
Update on Larry:
He is feeling better since he finished his medication for Cat Scratch Fever. He still suffers from a 101 temperature at night, and wakes up soaked from night sweats. I keep telling him to get it checked out in case it is related to the Cat Scratch Fever...but he keeps blowing it off.
He started having extreme pain in his neck Thursday night and he went to see a Chiropractor on Friday. They took some xrays and found that his neck is straight rather than having a natural curve in it. He was put on a therapy plan for rehabilitation to get his neck back to normal. Already, he has gone from not being able to move his neck at all...to having enough range of motion to drive. He is still having some pain, but nothing near what he felt Thursday and Friday. So the Chiropractor has done wonders for him!
She weighed 12 lbs 3.4 ounces and was 25 inches long. We just can't believe how big she is getting. It wasn't that long ago when I was holding a 4 1/2 pound baby in my arms! Her cheeks keep getting bigger and her legs are getting rolls on them....it is so cute!
Dr. Weneck did say that he wants to get an MRI done to check the status of the small teratoma that she still "supposedly" has. We also need to see a cardiologist to check the circulation in her legs. Her little feet are always cold and have a purple tint to them. Sometimes they are a dark tint of purple and other times they will be pink. So hopefully everything will be okay, but we need to cover our tracks and make sure that everything is working properly.
Kennedy slept through the night for the first time Thursday night! However, when we woke up Friday morning, I knew that something was wrong with Kennedy. She was extremely congested and had very glassy eyes. During her morning bottle, she ended up vomiting and then choking on her vomit because she could not breathe through her nose. We immediately called the doctor and he said to come in. They took her blood and the results showed an infection. He wrote out a prescription for her to start on, and said to come in Saturday morning for a follow-up.
We started her on the meds and she slept most of Friday evening. We let her sleep as much as she wanted so she could heal her body. I woke her up for her medication and to feed her before we went to bed, and she had no problems going back to sleep in her bassinet for the night. Starting to feel better.....she woke up for her usual 5:00 a.m. bottle! :)
Her blood was tested Saturday morning and it showed that her white blood cell count was going down, and that the medication was helping her. We are supposed to go back in 10 days to make sure the infection is gone. She is smiling again, and back to being her adorable self! Dr. Weneck thinks that she was fighting off the infection prior to the shots on Thursday...but the shots made her vulnerable for the infection to take over.
We will keep you posted on Kennedy! She is feeling a whole lot better and is almost back to normal.
Update on Larry:
He is feeling better since he finished his medication for Cat Scratch Fever. He still suffers from a 101 temperature at night, and wakes up soaked from night sweats. I keep telling him to get it checked out in case it is related to the Cat Scratch Fever...but he keeps blowing it off.
He started having extreme pain in his neck Thursday night and he went to see a Chiropractor on Friday. They took some xrays and found that his neck is straight rather than having a natural curve in it. He was put on a therapy plan for rehabilitation to get his neck back to normal. Already, he has gone from not being able to move his neck at all...to having enough range of motion to drive. He is still having some pain, but nothing near what he felt Thursday and Friday. So the Chiropractor has done wonders for him!
Sunday, August 10, 2008
New Website for Fundraisers
I have created a new blogspot to post information about the fundraisers. Currently I have all the information about Sergio's Pizza on there, and I have been contacted about a couple of other fundraisers that I will post when I get all the information.
The new blog is www.BabyRuffner.blogspot.com
If you need to get a hold of our family for any reason, you can email us at BabyRuffner@yahoo.com
Please feel free to submit any comments, prayers for Kennedy, or any prayer requests that are weighing on your heart to the email address or even on the comment section of the blog.
God Bless!
The new blog is www.BabyRuffner.blogspot.com
If you need to get a hold of our family for any reason, you can email us at BabyRuffner@yahoo.com
Please feel free to submit any comments, prayers for Kennedy, or any prayer requests that are weighing on your heart to the email address or even on the comment section of the blog.
God Bless!
Monday, August 4, 2008
Prayer Requests
Larry is recovering from Cat Scratch Fever right now, and is on some heavy medication for it. Yes, it is not just a song...lol...it's real. He was giving our cats a bath the other night and one of them bit him on his thumb. It swelled up really bad, so we went to the doctor and he gave him a medication and said to monitor it. If he got a fever and saw red streaks running up his arm, he needed to go to the emergency room. Well, the next night that is exactly what happened. He had to go to the emergency room and get evaluated there. They gave him some booster meds while he was there and prescribed him more medication to add to the other pills he was already taking. He is feeling much better now, and is not angry at Trapper for biting him. lol.
Also, JR Butcher had a little scare last week.. He had to go back into the hospital because they thought something was wrong again. To keep up on his progress, visit his blog at http://www.caringbridge.org/visit/jrbutcher . After looking at his symptoms, they are talking about having another surgery. He will be able to come home on the same day of his surgery, and they think he will be fine.
Thanks for your prayers!
Also, JR Butcher had a little scare last week.. He had to go back into the hospital because they thought something was wrong again. To keep up on his progress, visit his blog at http://www.caringbridge.org/visit/jrbutcher . After looking at his symptoms, they are talking about having another surgery. He will be able to come home on the same day of his surgery, and they think he will be fine.
Thanks for your prayers!
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