2 years ago, about this time, life as we knew it was...normal. It is unreal to think that 2 years have passed since Reilly, for lack of better words, exploded. Today, she is having the time of her life on her 101st day of school. Big celebration yesterday for being 100 days smarter. She has tumbling tonight and is preparing for her review this summer. Big girl gets her medicine and writes it down herself. She wants to be dropped off in the back of school, to walk in by herself, because, with her hand on her hip, she says "I'm not a baby anymore."
And she's not. She's a big girl, in more ways than she can possibly understand. Reilly has experienced unbelievable medical situations. She charms most everyone and takes each step in stride. To see her, unless you know, there are very few outward indications that things on the inside aren't so right. And granted, my girl is doing AMAZING. She feels fine, she feels normal (half the battle in my book). She acts like a very precocious 5 year old is supposed to act, except she takes medicine every day and sometimes has to remind us not to forget. She closes her eyes and almost never cries for weekly bloodwork (though we do get to do it at home through a finger prick most of the time now).
I would like to think that it is a testament to fantastic parenting, but in reality, Reilly is a testament to God's amazing grace. Who would have known that Dr. Noel would be on-call that Monday night. Who would have suggested to us to seek out world-reknowned physicians in Chicago that specialize in just this type of thing. Who would have known that these kind, compassionate, knowledgeable people would quickly become such an integral part of our lives. She smiles through the adventures and burgeons my strength when I just want to cry because there is nothing further I can do. I cannot make this go away. I have to place my daughter's life, her health and well-being, in the hands of doctors and specialists and trust that my research, knowledge and their expertise combine to make the right choices.
Then, I think about it and I am just thankful. I'm thankful that we get to enjoy this wonderful little person who makes us laugh, makes us go crazy, and who you can't help but grin and giggle with. Such joy. And so, today, on this 2 year anniversary, I'm happy with the way things are.
I have learned so much these past two years...
I know a lot of stuff about the human body that I never cared to know. I know that the best way to combat fear is with knowledge and preparation. Feed your curiousity and take away the unknown. Once you make a decision, do not second guess yourself - seeds of doubt will make you crazy. The people that I love the most are the ones that give me hugs and make me smile when I don't even realize I need to. I've learned that if you make enough noise when things aren't going right, someone that can help usually pays attention. I've learned that you cannot, for one second, forget about the "medical situation", but sometimes it is perfectly fine to go out and party like a rock star and own the moment. She may not ever get the opportunity to experience that again, so if you are going to do it, DO IT RIGHT and DO IT ALL THE WAY!!! I know that some of my favorite times with my kids involves really loud music and dancing like fools in the kitchen. Everyone should try it, I can think of no better way to cook dinner. I have learned that I have really amazing and spectacular family and friends.
Reilly goes back to Chicago in just under 2 weeks and then we will mark her 1 year date from her surgery. Time is flying by!
Thursday, February 28, 2013
Thursday, February 7, 2013
It's Been A While...
It's been a while since my last post. Sorry about that, but sometimes, life gets in the way! I can't complain, though.
Reilly's visit to Chicago in December went fairly well. Her shunt is still clotting in the same area so in March she will undergo interventional radiology therapy (they will access her shunt through a vein in her leg and balloon it and clean it out) at her follow up visit then. Hopefully, that solves the problem and we will continue as normal (well, normal now!). I'm not going to talk about if it doesn't work because I'm keeping a positive mental attitude and I don't want to talk about that anyway.
Reilly is feeling fabulous and seems to be meeting milestones. She is in the 25% for height and 5% for weight. She saw Dr. Noel this week and it was a GREAT visit. She gained 3 pounds (which brings her to a whopping 38), and will return to follow-up shortly after her March visit to Chicago and then hopefully not again until around October! Her INR (clotting time) has been all over the place, but her ammonia levels have been staying low and well within normal limits since November! It's amazing, really.
On a side note, the kids got to pet one of the Budweiser Clydesdale horses at Children's Hospital NOLA the other day after Reilly's appointment. HOW COOL IS THAT?!?!?!?! It was awesome. I love what they do for kids there! I love that the community partners to give children and their families really amazing experiences and memories. Definitely a neat thing to pet a giant horse under the front portico of the hospital, germ wipes and all!
Reilly can read now. Yep, she felt like she won the lottery when she informed us that she can read, and read to us from her book the first time. I LOVE that she has such a fire for learning! This year of Kindergarten has really helped her bloom and blossom. She is still sassy and still hysterically funny, but she is now a little girl and no longer a baby. (Just ask her, she will tell you).
All things considered, Life is Good right now. We actually even made it through the worst of the flu season with not even a runny nose in the entire house! Unbelievable. I will cheer for the smallest victories! (Even though I am probably jinxing things just by posting that). The kids have been to the parades, I think Reilly was Cole's biggest cheerleader when he got to march in one of the parades this year. Someone screaming for you like that has GOT to feel like being a rockstar!
I apologize again for the delay in posting, but we have been busy making lots of memories and enjoying the holidays, SuperBowl, easing in to Mardi Gras and getting ready for Valentine's day! Please continue to keep Reilly and our family in your thoughts and prayers. She is making progress every single day, but she still has some hurdles to overcome and you can NEVER have too many prayers!
Reilly's visit to Chicago in December went fairly well. Her shunt is still clotting in the same area so in March she will undergo interventional radiology therapy (they will access her shunt through a vein in her leg and balloon it and clean it out) at her follow up visit then. Hopefully, that solves the problem and we will continue as normal (well, normal now!). I'm not going to talk about if it doesn't work because I'm keeping a positive mental attitude and I don't want to talk about that anyway.
Reilly is feeling fabulous and seems to be meeting milestones. She is in the 25% for height and 5% for weight. She saw Dr. Noel this week and it was a GREAT visit. She gained 3 pounds (which brings her to a whopping 38), and will return to follow-up shortly after her March visit to Chicago and then hopefully not again until around October! Her INR (clotting time) has been all over the place, but her ammonia levels have been staying low and well within normal limits since November! It's amazing, really.
On a side note, the kids got to pet one of the Budweiser Clydesdale horses at Children's Hospital NOLA the other day after Reilly's appointment. HOW COOL IS THAT?!?!?!?! It was awesome. I love what they do for kids there! I love that the community partners to give children and their families really amazing experiences and memories. Definitely a neat thing to pet a giant horse under the front portico of the hospital, germ wipes and all!
Reilly can read now. Yep, she felt like she won the lottery when she informed us that she can read, and read to us from her book the first time. I LOVE that she has such a fire for learning! This year of Kindergarten has really helped her bloom and blossom. She is still sassy and still hysterically funny, but she is now a little girl and no longer a baby. (Just ask her, she will tell you).
All things considered, Life is Good right now. We actually even made it through the worst of the flu season with not even a runny nose in the entire house! Unbelievable. I will cheer for the smallest victories! (Even though I am probably jinxing things just by posting that). The kids have been to the parades, I think Reilly was Cole's biggest cheerleader when he got to march in one of the parades this year. Someone screaming for you like that has GOT to feel like being a rockstar!
I apologize again for the delay in posting, but we have been busy making lots of memories and enjoying the holidays, SuperBowl, easing in to Mardi Gras and getting ready for Valentine's day! Please continue to keep Reilly and our family in your thoughts and prayers. She is making progress every single day, but she still has some hurdles to overcome and you can NEVER have too many prayers!
Monday, October 22, 2012
6 month post-surgery Update
I haven't posted since our follow-up visit to Chicago in September because, frankly, some things are hard to accept and talk about. The visit itself went fine, nothing got stolen and no one got hurt. She made it through the CT scan without incident, even got big-girl points for getting her IV without the numbing medicine (which scares her and causes a freak-out). The CT scan showed that her shunt is clotting at one of the connection points. There is also a kink in the shunt. All indications since are that the shunt is narrowing (various blood tests and physical markers like spider veins on her body and spleen enlargment). It is Dr. Superina's impression that the kinking is due to her interval growth (which was a lot in a short amount of time) and, for lack of better words, her guts shifted to accomodate her growth and now the shunt is kinked. The clotting is likely the cause of the increased amount of spider veins on her body and for being able to see and feel the veins in her abdomen much more clearly (similar to prior to the shunt surgery).
Reilly is scheduled for a scope procedure this Thursday and we will have a lot better information gained from this procedure. Since we have been back from Chicago, her ammonia levels spiked and she is back on medicine to keep those under control.
There is a very good liklihood that Reilly will need what is called "interventional radiology therapy" in an attempt to remove the clot from her shunt and possible straighten it out. It involves a procedure where the radiologist goes in through veins in her leg and balloons the shunt and cleans it out. We are not certain at this point whether this will need to be done prior to her follow-up in December or right after the first of the year. The scope will tell us and her doctors more about how critical the issue is and whether it is reasonable to wait until after the first of the year to try this procedure.
If for some reason the balloon procedure does not work, the next step would be to go in and replace the shunt. Yes, all over again.
Right now, we are still getting our heads and our hearts around this situation.
We have had some bright news though, Reilly and Cole have a baby cousin! Isaac David, my brother and sister-in-law's baby, was born October 16. We are all very excited and glad that he is finally here!
I will update soon! Love and thanks to all who keep Reilly and our family in their thoughts and prayers.
Reilly is scheduled for a scope procedure this Thursday and we will have a lot better information gained from this procedure. Since we have been back from Chicago, her ammonia levels spiked and she is back on medicine to keep those under control.
There is a very good liklihood that Reilly will need what is called "interventional radiology therapy" in an attempt to remove the clot from her shunt and possible straighten it out. It involves a procedure where the radiologist goes in through veins in her leg and balloons the shunt and cleans it out. We are not certain at this point whether this will need to be done prior to her follow-up in December or right after the first of the year. The scope will tell us and her doctors more about how critical the issue is and whether it is reasonable to wait until after the first of the year to try this procedure.
If for some reason the balloon procedure does not work, the next step would be to go in and replace the shunt. Yes, all over again.
Right now, we are still getting our heads and our hearts around this situation.
We have had some bright news though, Reilly and Cole have a baby cousin! Isaac David, my brother and sister-in-law's baby, was born October 16. We are all very excited and glad that he is finally here!
I will update soon! Love and thanks to all who keep Reilly and our family in their thoughts and prayers.
Monday, September 17, 2012
It's Been A While
It has been a while since my last post, and a LOT has occurred. Reilly celebrated her 5th Birthday with an EPIC Strawberry Shortcake party, complete with water balloons. She really had a great day. The kids have started school, but an interesting start it was. Cole had 2 days of school and then a little storm named Isaac decided to visit us here. No school for the entire week before Labor Day, including what was supposed to be Reilly's first day of Kindergarten. Try explaining that to a kid who doesn't fully understand the days of the week yet. However, we made it. Reilly has been really enjoying herself at school and seems to be handling everything well. She also, just yesterday, caught her first fish! The sound effects made the whole experience priceless. She was hooting and squealing when she actually reeled it in, we weren't really sure what was going on!
This week Reilly and I head back to Chicago for her 6 month post-surgery visit. Hard to believe it has been 6 months already. She has grown 3 inches since her surgery and she finally made it to 35 pounds! (It is such a big deal that we got a new car seat for making 35 pounds and keeping it on for 2 weeks!) So, this is a big check-up. I will update over the weekend with the news from Dr. Superina and what the CT scan indicates.
Given what happened last time, I will definitely hold onto my wallet without exception! Thanks for continuing to lift Reilly and our family up in prayer. Love to all.....
This week Reilly and I head back to Chicago for her 6 month post-surgery visit. Hard to believe it has been 6 months already. She has grown 3 inches since her surgery and she finally made it to 35 pounds! (It is such a big deal that we got a new car seat for making 35 pounds and keeping it on for 2 weeks!) So, this is a big check-up. I will update over the weekend with the news from Dr. Superina and what the CT scan indicates.
Given what happened last time, I will definitely hold onto my wallet without exception! Thanks for continuing to lift Reilly and our family up in prayer. Love to all.....
Friday, June 29, 2012
June 20-21 Chicago Visit / Update
Sorry it has taken so long to post, we have had an eventful couple of weeks in our family. On Tuesday of last week, Reilly started running fever. My thoughts were, hey - we are leaving for Chicago on Wednesday and going to a hospital, we should be fine. Well, Wednesday, she started with the congestion and LOTS of snot. We made it to Chicago, beautiful weather, and NO humidity. Her ultrasound looked amazing, shunt is patent and working properly. There is no buildup on the walls of the synthetic material. Her spleen is a perfectly normal size (whooohooo), her gallbladder wall has thinned to normal (it was very thick prior to surgery), her liver has reduced in size (still a little large, but very manageable), and all other organs seem to be in proper working order.
As a treat, we went to eat at RainForest Cafe. Somewhere between parking with the valet and walking into the restaurant, or sometime while we were in the restaurant, someone stole my wallet. Yes, I know, NIGHTMARE. Money, bank card, credit card, ID, insurance cards, everything. So, after an enormous freak-out session, a long walk, and frantic calls to get my hands on funds (to pay the bill at the restaurant and get the car out of the parking lot), we made it back to the hotel for the night. I spent much of the rest of that evening on the phone cancelling cards and speaking with the police, trying to figure out how I was going to get on a plane to get home the next day.
Friday morning we saw Dr. Superina. The hospital has moved to a brand new, state of the art facility, and I must say that the view from the exam room was absolutely breathtaking. We had a great view of Lake Michigan on a beautiful summer day. Dr. Superina is very satisfied with Reilly's progress so far. She was not happy with the fact that he was dressed in jeans and a shirt and she asked him, "Where's your doctor clothes?" He told her he thought he would be casual today, to which she replied, "Not even your coat?" (with her hand on her hip, I'm sure you can imagine the scene). She WAS happy that he said she can do what she seems to be able to handle, making sure to watch any blows to her head and significant blows to her abdomen. REALLY GREAT NEWS!
So, we make it on the plane, with WAY less hassle than I thought we would have (a huge thank you to Officer Bracken of the Chicago Police Dept. for his help with the report and for faxing it to my hotel). We get home and Reilly seems to be getting worse, she's very congested and now has no voice and is coughing a lot.
On Monday, I started a new job. Go me! Reilly had to go to see the pediatrician because she was not sounding good at all. Because of the fever, she was tested for the flu, and sure enough, Type B. Lovely.
As of today, she is feeling much better and she sounds much better. She still has a little bit of a really nasty sounding cough, but it is loose and moving. No fever since about Saturday, so the pediatrician thinks we are in the clear. GIANT SIGH OF RELIEF. We were concerned about a secondary infection and/or pneumonia, but hopefully that has been avoided.
We made it through the week, we all survived, and seem to be on the right track. She will follow up with Dr. Noel in a couple weeks and then back to Chicago in September. She will have a CT scan then and pending what everything looks like at that point, she may be taken off of Coumadin and put on a different clotting medication that does not require constant monitoring (with blood work, etc.). So far, looking good! YAY!!!!
Please continue to keep Reilly in your thoughts and prayers.
As a treat, we went to eat at RainForest Cafe. Somewhere between parking with the valet and walking into the restaurant, or sometime while we were in the restaurant, someone stole my wallet. Yes, I know, NIGHTMARE. Money, bank card, credit card, ID, insurance cards, everything. So, after an enormous freak-out session, a long walk, and frantic calls to get my hands on funds (to pay the bill at the restaurant and get the car out of the parking lot), we made it back to the hotel for the night. I spent much of the rest of that evening on the phone cancelling cards and speaking with the police, trying to figure out how I was going to get on a plane to get home the next day.
Friday morning we saw Dr. Superina. The hospital has moved to a brand new, state of the art facility, and I must say that the view from the exam room was absolutely breathtaking. We had a great view of Lake Michigan on a beautiful summer day. Dr. Superina is very satisfied with Reilly's progress so far. She was not happy with the fact that he was dressed in jeans and a shirt and she asked him, "Where's your doctor clothes?" He told her he thought he would be casual today, to which she replied, "Not even your coat?" (with her hand on her hip, I'm sure you can imagine the scene). She WAS happy that he said she can do what she seems to be able to handle, making sure to watch any blows to her head and significant blows to her abdomen. REALLY GREAT NEWS!
So, we make it on the plane, with WAY less hassle than I thought we would have (a huge thank you to Officer Bracken of the Chicago Police Dept. for his help with the report and for faxing it to my hotel). We get home and Reilly seems to be getting worse, she's very congested and now has no voice and is coughing a lot.
On Monday, I started a new job. Go me! Reilly had to go to see the pediatrician because she was not sounding good at all. Because of the fever, she was tested for the flu, and sure enough, Type B. Lovely.
As of today, she is feeling much better and she sounds much better. She still has a little bit of a really nasty sounding cough, but it is loose and moving. No fever since about Saturday, so the pediatrician thinks we are in the clear. GIANT SIGH OF RELIEF. We were concerned about a secondary infection and/or pneumonia, but hopefully that has been avoided.
We made it through the week, we all survived, and seem to be on the right track. She will follow up with Dr. Noel in a couple weeks and then back to Chicago in September. She will have a CT scan then and pending what everything looks like at that point, she may be taken off of Coumadin and put on a different clotting medication that does not require constant monitoring (with blood work, etc.). So far, looking good! YAY!!!!
Please continue to keep Reilly in your thoughts and prayers.
Monday, June 18, 2012
Chicago this week....3 months post surgery tomorrow
We have had a very busy past few weeks...and we survived the dance revue! Reilly thoroughly enjoyed her first ever dance revue, and made it through without incident! She has been hanging in there, all things considered. Her bloodwork has been relatively stable, with minor fluctuations. We will be back in Chicago Thursday and Friday for her 3 month follow up! I cannot believe that it has been 3 months already. I am so thankful that as of now, we have had no major issues. I'm happy to make it through the day without a nose bleed! I will post after her visit with the results of her ultrasound and exam.
Please continue with the prayers and support. They are much needed and deeply appreciated. Love Always!
Please continue with the prayers and support. They are much needed and deeply appreciated. Love Always!
Sunday, June 3, 2012
Update
On May 30, Reilly saw Dr. Noel for a follow-up visit. Her blood work was mostly good, her ammonia levels are still high - but at a safer level and being managed with the lactulose. A few things are either high or low, but are explained by either her medications or effects of the surgery. Baby girl grew a little over an inch in 6 weeks! Sprouting up like a weed! She has not gained enough weight though, less than half a pound. Now we are working on putting weight on her frame through diet.
Yesterday, we participated in the Children's Hospital Telethon and Reilly had a grand old time on set. She was very excited to be a part of the event and also voted herself the cutest kid on the telethon! Not a shy girl at all. It was such a blessing to be a part of such a meaningful event. Without Children's Hospital and Reilly's doctors there and Children's Memorial Hospital in Chicago, I'm not sure that she would be around to be able to participate. For that reason alone, I will be forever indebted. We are fortunate in so very many ways and it is nice to be able to do a small part in helping to give back.
Reilly has a followup in Chicago at the end of June and then we see Dr. Noel again in July. I am pretty sure we can handle one doctor visit per month. Let's pray that things keep going the same way and there are no complications!
So, Happy Summer, Happy Hurricane Season, and continued prayers of health and healing! I'll keep you posted!
Oh, she will have her very first dance revue in 2 weeks - which should prove to be very interesting. Anyone who knows me will understand that I'm not really a "dance mom" and this whole dance revue thing is definitely a trying experience for me. Reilly, however, is a rock star and can apparently handle it all, with a smile! I'm taking lessons, let's hope they pay off!
Yesterday, we participated in the Children's Hospital Telethon and Reilly had a grand old time on set. She was very excited to be a part of the event and also voted herself the cutest kid on the telethon! Not a shy girl at all. It was such a blessing to be a part of such a meaningful event. Without Children's Hospital and Reilly's doctors there and Children's Memorial Hospital in Chicago, I'm not sure that she would be around to be able to participate. For that reason alone, I will be forever indebted. We are fortunate in so very many ways and it is nice to be able to do a small part in helping to give back.
Reilly has a followup in Chicago at the end of June and then we see Dr. Noel again in July. I am pretty sure we can handle one doctor visit per month. Let's pray that things keep going the same way and there are no complications!
So, Happy Summer, Happy Hurricane Season, and continued prayers of health and healing! I'll keep you posted!
Oh, she will have her very first dance revue in 2 weeks - which should prove to be very interesting. Anyone who knows me will understand that I'm not really a "dance mom" and this whole dance revue thing is definitely a trying experience for me. Reilly, however, is a rock star and can apparently handle it all, with a smile! I'm taking lessons, let's hope they pay off!
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