Friday, February 27, 2009
We started paper-chasing for daughter #2 back in August 2006. Shortly before we started the paper chase again, we were already seeking treatments for Francesca's bowel issues and learning so much. As the wait time from LID to referrals increased (we were finally LID with China in April 2007), we decided to take a look into the possibility of adopting a special needs/waiting child. After doing a ton of research, we submitted our MCC (medical conditions checklist) with our agency back in October 2007 for a special needs/waiting child referral (now remember we marked off many of the conditions mentioned on that list). Months went by without a word from our agency and we continued to seek the best possible medical treatment for our daughter, Francesca ,who was already at this point been diagnosed with a mega colon and who has already had several procedures completed in order to help her. In the middle of May 2008, Francesca had an appointment with her gastro-specialist. During her appointment, Francesca started talking about her baby sister and how she is currently living in China just waiting for us to come and take her home. Her specialist was really intrigued and started asking me questions on our second adoption. I than explained to her about the switch we made from China's traditional program to the Waiting Child/ Special Needs program and that we were still waiting for a referral...and it was at that time when our Doc asked me if we marked off "mega colon" as one of our acceptable conditions and I told her NO, that "mega colon" wasn't listed as a choice on our list and that I didn't know if it was even possible for us to include that as an acceptable condition for us through our agency. Francesca's specialist's response was "That's too bad because you guys really know whats going on with mega colons and another child diagnosed with this condition would benefit so much from your knowledge, commitment, and love." Now, she had me thinking....When we arrived home after leaving the doctor's office, I quickly pulled out our copy of the MCC that we submitted back in October 2007 to see if there was a spot on the form to include a mega colon and there was...on the form was a "write in" area where you can list other conditions that we not already listed. I quickly called Keith and asked if he would be on-board with adding a mega colon as one of our MCC choices. His response was exactly what I expected...he said, "Go for it!" I than updated our MCC and mailed it off to our agency in Colorado. A week later, I called our agency to see if they received our updated MCC which they didn't so I than decided to fax it to them. Once I got the confirmation from the fax machine that it was sent, I called our agency back to confirm that they did get it. The representative from the WC department I got on the phone was a little short with me with regards to the new conditions I wrote in. Her exact words to me were, "We never get children with mega colons...let alone one that has been diagnosed with a mega colon at such a young age. So don't expect a referral for one." Her words did not discourage me at all, but they did come back to haunt her...for a month later, for on June 27th, I received a phone call from our WC department head with a referral for a little girl who at the time was 14 months,and was living in Beijing at a care center where she was placed after having emergency surgery on her mega colon when she was just 2 months old. Words can not explain what I was feeling when I got that phone call. Only one month before, we decided to add the words "mega colon" to our already filed MCC. And here we are, with a referral for a little girl who fits all of our dreams, hopes, and expeditions. Since we already had a child with mega colon, I just knew what was important for us to take...in excessive amounts of...to China for when we traveled back in October - November 2008. Diapers...over 300 of them - over 600 wipes - large amounts of Miralax, Benefiber, and Fletcher's Laxative along with a lot of tubes of diaper rash creams, and a few Fleet Enemas. These were items I just knew we would need to have with us over in China...because now we would have two children living with a mega colon. Right from the beginning, Annabelle was nothing like our Francesca. She bonded very well to me and cried very little when in China. She ate anything & everything and took her medications like a champ. Her poops where what I would call very normal and I knew exactly what needed to be done for when she did not have one. Since arriving home, she has had no issues with her mega colon. She hasn't even seen the gastro specialist because we are so not experiencing any issues. She poops normally and goes at least every day~ once a day. The only thing I do watch is her fiber intake. She too is on a high fiber diet and takes 3 teaspoons of Benefiber daily. The reason for the high fiber diet is because she DOES have a mega colon....even though it is not causing her any problems. Now remember, she did have surgery on her mega colon for a life threatening blockage back in June 2007 and according to her Chinese medical records everything went well with the surgery. Now with that said, I often find myself questioning both of our daughters cases and treatments. Is Annabelle mega colon not affecting her life as much as it does Francesca's because she had the surgery...we do not know. We have looked and looked for an answer to this very question in several areas but it always seems to be answered the same way...two kids...two different mega colons.
So there you have it. Our two daughters medical condition stories. I hope this helped you all understanding a little bit more of what we live with, how we are living with this disease daily, how it affects not only their lives but ours too, and what we are doing to help our children during their times of need.
We did submitted another MCC with our agency in December 2008 for a 3rd child from China that has been diagnosed with a mega colon, constipation, and/or bowel obstruction. Only time will tell if we will again be the lucky ones who will received another referral for either daughter #3 or son #1....only time will tell
Monday, February 23, 2009
Mega colon is an abnormal dilatation of the colon (a part of the large intestines) that is not caused by mechanical obstruction. The dilatation is often accompanied by a paralysis of the peristaltic movements of the bowel. In more extreme cases, the feces consolidate into hard masses inside the colon, called fecalomas (literally, fecal tumor), which require surgery to be removed.
Now, can it be a serious condition...YES! Can it be fatal...YES! And is it a condition that someone can live with...YES!
Now with that said, I must admit I have thought a lot about doing a post like this but never really had the courage to. How can I express to you all what living with not only one child who has a mega colon but two is like and how much of "our world" depends on who pooped and how much did they poop? My wonderful friend Sara from Football & Fried Rice asked me about doing a post where I can tell our story of our two daughters and their diagnosed medical conditions. So after much thought and energy (on how to tackle this) I have decided to give this a try. Here is part one to our story below starting with our oldest daughter, Francesca who is truly one beautiful little girl...inside and out!
When Keith and I started our adoption journey (after experiencing some set backs on starting our family) we never dreamed where this journey would lead us to and how we would accept where our chosen path lead us. Our oldest daughter Francesca was adopted from China back in November 2005 through China's traditional program. She was 10 months old at the time of our adoption. She was such a scared and very emotional baby when placed into my arms on the never-going-to-forget day three years ago. Within minutes of her being placed in my arms, I knew something just wasn't right. She cried...and I mean cried for a long time and after looking back on the photos that were taken when in China...she just looked so lost. I wish I knew than what I know now but as they saying goes, you live and you learn...and we truly did. Once we arrived home, we noticed that she was having some bowel issues from not going - to - going way too much. We tried everything from regulating her diet to increasing her daily intake of fluids. Medication and exercises were also tried with no such luck. Now, please keep in mind, we had no idea what was going on and after many MANY appointments with our pediatrician, he decided to send us to a specialist to see if they pin-point the problem. Now please remember that during this whole time Francesca personality was a little bit like a roller coaster ride. Sometimes, she was very happy and other times, she was just miserable. In my heart, I just know that something was not right. Within the first 20 minutes of our appointment with the gastro-specialist, she was able to confirm that Francesca indeed has a mega colon and it was very serious. She was severely impacted and something needed to be done that day to relieve her ASAP! She was admitted into the hospital and started getting the needed medications through a feeding tube (that was placed through her nasal cavity). This poor little girl...my heart just broke. Going through China's traditional program was not a guarantee that we were going to get a healthy baby by all means, but we so never expected this. According to her doctors, if action didn't take place that day, we could of had a very different outcome. Since that day, not only have I done a ton of research on mega colons, joined a local support group (our daughter was at one time the youngest member...now our Annabelle is), but I have been faithful in giving her the medications that she needs several times a day and have support & encouraged her in eating a high fiber diet (which is not always that easiest thing to do). Francesca's mega colon has put limits on her life. She has dealt with having serve diaper rash for most of her life...all the way to bleeding sores on "her bottom" because of her mega colon (she has scars "down there" from the sores she has experience) and has experienced several major "blow -outs" where her bowels just get so backed up and she can no longer hold "it" and it explodes...everywhere (this is the other side to her mega colon - either she is blocked up and needs a ton of medicine and/or professional help to help her movements along...as I mention above - or - she just can't control her bowel movements and it is explosive) . Since she is having a very hard time getting potty trained (her bowels are constantly working and constantly leaking because of her medications...she can NOT get constipated), she can not go to preschool, she can not join dance classes, she can not take art classes and everywhere we go, we must carry a load of diapers with us for changing purposes and she is very limited on what she can do because of still being in diapers. When I ask her about being potty trained and going on the potty, this poor little dear just feels that it will never happen and she feels that her bowel problems are more controlling & important in her life than wanting to take some art classes and/or preschool. (how sad is that!) Keith and I are very passionate about helping our children and this situation is no different. After asking a lot of questions, having many pow-wows with all Francesca's doctors, and doing a lot of research, we decided to try and conquer this disease in a very different way. A few weeks ago, Francesca and I started seeing a child psychologist who specializes in children with medical disorders. So far so good. Her therapist has been wonderful and has some great ideas to help out Francesca with her bowel and emotional issues. Since our first visit with her therapist, I have learned so much about our Francesca's life before being placed into my arms that day three years ago and I have also learned so much from her therapist on why Francesca is the way she is. Some of the things we did learn about our Francesca and her life at her orphanage was that they most likely knew that she did have a bowel problem and since they didn't know how to handle it or treat her for it...the only thing they could do was tie her to a potty chair for long periods at a time (we know this because of the markings that we on her legs when we first gotten her and after our therapist did some research...our biggest fears were confirmed...she was tied to a potty chair for long periods of time). Also we discovered that she was never in foster care (as all the other children that were adopted at the same time as Francesca) because of her bowel issues and she never formed any type of bond with anyone from her orphanage (how could she when she was left alone in a room most of the day...all by herself). Just learning this helped us understand so much about why our little girl acted & behaved the way she did. Now, I am not saying that she was mistreated in any way. I do feel and believe that her care takers just didn't know what else to do. I am not blaming anyone for this...I am just happy that I finally got some information...proof...to back up my suspicions on what I thought happened before being united with us. Now with all this said, I can truly see why our little girl does have such strong issues with her bowels. Not only does she have a mega colon...but her early treatment for the mega colon was not the way her condition should of had been handled...especially the emotional bonding that she never experienced before coming into our lives. We now know that reassurance, love, trust, and communication are the keys to living with a mega colon...(oh ya...and a high fiber diet too!)
Please remember that Francesca has not have any surgery to correct her mega colon. Her specialists believe that the part of her colon that is affected will over time go back to its normal size. Am I overly happy about all the medication she is on...no I am not, but if she doesn't take it...she get blocked up...and that is just not good for her. If you are wondering what types of medication she takes, here they are...Miralax over 17grams per day - Benefiber 2-4 tablespoons daily, a stool softener...depending on diet intake for that day - and Fletcher's laxative for when she misses a day of going....along with doubling up on all her other medications and if needed, Fleet enemas (which we had to resort to many times in the past).
Only time will tell what will happen with Francesca. We live with this disease every day...dealing with a ton of medications, a strict diet and constant discussion about poop. We also deal with issues of that little girl being tied to a chair for long periods of time without anyone around. Francesca has conquered so much over the three years she has come home with us and this is not going to stop her living her life. We are making sure of that. This is Francesca's story of her life ~ so far ~ with a mega colon.
Since we learned so much over the years of successful and failed treatments and since we feel we have an amazing team of doctors and specialist backing us up 100%...we felt it in our hearts to seek another daughter from China that also has been diagnosed with a mega colon...and this is where our Annabelle's story will begin with the next few days.
(I am going to have to break up both girls' posts. Looking back and reliving all that has happened is very emotionally draining for me. I will be posting Annabelle's story here in the next few days...so please come back. You'll truly see why this disease can be so different...and what factors in on that happening...)
UPDATE: Since I started to compose this post, we have started again down the journey of potty training. With the network of supporters we have surrounding us, it looks like that we are making progress! She is doing well and I am so proud of her! I so wish I could go into more detail at this time, but for the respect of my daughter's struggle and privacy, I am going to hold off on her progress until I feel comfortable exposing the details here. If anyone at any time has questions regarding this post, I would so appreciate that you would email me privately so we can discuss this further...
Friday, February 20, 2009
I just love Glenn Close in this flick...she so cracks me up..."Woof - Woof!"
(Francesca was kind enough to take the photo of me with this week's feature film...and I did not edit it! I think she did an amazing job...seeing how it was her first time behind the lens! As for me cracking up in the photo, you can see Annabelle sitting next to me on the couch. As Francesca was trying to take the photo, our Miss Annabelle was lifting up my shirt from behind and tickling me. Here I was trying to help out Francesca in how to use the camera and all the while Annabelle was having her our fun...at my expense! I just had to leave it unedited because I truly think Francesca capture the moment!!!)
AND...(now here is the exciting news!)
As of Sunday, Francesca is progressing very well on her potty training. She has only had one major accident and one minor accident (and that is saying a lot for a child who had a mega colon). I had to put my foot down and there is no more diapers! She is wearing "big girl panties" all day long with a little assistance (her doctors suggested we use a pantie liner in her underwear because of the leakage from her rectum and they are helping out a lot). I can't begin to tell you how proud we are of her! And she is so very proud of herself too! (and our Annabelle isn't going to be too far behind her big sis...she is already asking about going on the potty and telling us that she has to go before actually going...I might even get a two for one deal here ~ this is all way too exciting!)
We are all still not feeling well in our household and now it looks like our Annabelle is coming down with it too. Anyway, here's looking forward to a relaxing weekend and only a few more hours until Daddy comes home...YEAH! We are scheduled to have some professional family portraits taken on Saturday, but if I am still feeling and looking like I do...the pale skin, the more than normal dark circles, and some major break-outs (who would have though that at my age I would still get pimples) I might have to reschedule the appointment. I'll keep you all posted.
Here's to wishing you all a great weekend and I am looking forward to returning back on Monday!
Thursday, February 19, 2009
Here is a quick photo of our Francesca baking her favorite cookies...and I mean HER FAVORITE!
(I know they are from Pillsbury's Holiday Selection - The Reindeer - but right before Christmas I stocked up on a few boxes and placed them in the freezer for us to enjoy until the news ones came out. We missed the Valentine ones but I did get my hands on two boxes of the St Patty Day's Shamrock ready-to-bake-cookies. Oh how she can't wait but we need to finish up the Reindeer and Snowman first that are still in the freezer...only two more boxes left which I know we have baked and eaten by the beginning of March...seeing how much both our girls just love these cookies!)
AND...we are all sick in our household this week and going crazy with having to stay indoors! I am also again starting to potty train Francesca again - but we are again - having issues because of her mega colon (her story will be posted soon).
Also on the home front ~ I finally got around to set up an account on FaceBook this past week and I am so addicted to it! I have already reconnected with a ton of people from BK and BC years! So far, it has been a ton of fun (I can't seem to get enough of it ~ probably because it is all so new!) That's about all to report on our end for the week. Hope everything is going well for all of you out there....We'll be seeing you all again very soon...
Tuesday, February 17, 2009
(you'll see from the photos below how we decided to add a little bit of goodies to our already fabulous pumpkin bread!)
Here is our Annabelle helping out in mixing up the ingredients.
Making sure they are all blending together....
Adding some Peanut Butter Chips to the mixture...
Than some mini marshmallows...
And finally topping the whole thing off with some ground cinnamon, nutmeg, and fine sugar for a super sweet taste!
Sunday, February 15, 2009
This week it was Daddy's turn to chose the movie and his choice was...Monsters Inc. The girls are super excited about watching it ~ so much so that Francesca is already asking us, "How many more hours until we can watch the movie?"
(the girls are going to really love tonight's feature film because I also made an Oreo Cookie Pudding Pie for all of us to enjoy!)
Here's to a wonderful evening of family, fun, food, and our featured film!
Wednesday, February 11, 2009
I have been wanting to post this photo that was taken around Thanksgiving time by my stepmother of me and my Dad. I just love it! I miss them so. Seeing how they live at the beach, I know we'll be making a lot of trips down there this coming summer....and we can't wait! (Francesca is already talking about going to Papa & Grandma C's house at the beach!)
Life here in our household has been really cRaZy this week. Annabelle has been a handful. Not sure if she is just "searching herself out" or if she is not feeling well but I am very ~ tired ~ and it is only Wednesday. Also, we have been doing a lot of running around this week. The weather here has been beautiful so we are finally venturing outside to enjoy the sunshine and melting snow. Today I had an appointment with Francesca's therapist that went very well and seems promising. I just hope that what suggestions she gave to us work. (I know I haven't mention Francesca going to therapist before this but we decided about a month ago to seek some additional help on her mega colon/potty issues). Seeing how she can't join any activities (like dance, art classes, and preschool) because of her mega colon, we need to do something to help her. So as you can see...things have been a little crazy around here.
(so looking forward to the weekend...and it is coming soon)
Sunday, February 8, 2009
Since last Spring, we have been enjoying Family Movie Night every Sunday evening. For us, it was a way for Daddy, Francesca, and Mommy to have a night of snacks and laughter while enjoying a wonderful movie. Every week ~ each family member taking a turn ~ one of us will picked out the movie that will be viewed. It has truly become a family weekend tradition that we all so look forward too. Since our Miss Annabelle has joined our family, it has been a little bit difficult to get her involved in family movie night, but since we would not give up this very special time together, she has adapted very well to sitting through the chosen movie. The movies choices range from our wide range of Disney's collection - to - the Old Time classics that we all so love. This week it is Francesca's pick and she chosen....
Francesca so loves our family movie night! She starts questioning about the movie choices around Wednesday evening and gets so excited that she will actually mark off the days on her calender and do a count-down to movie night. Now, there are times when we as a family have prior commitments on a Sunday that do not allow us to enjoy the chosen feature film, but seeing that we are flexible and that this time together means so much to us, we just push Family Movie Night up to Saturday and enjoy the festivities one day earlier.
Since this blog is about our family and what happens in our daily activities, I am going to be featuring a "Family Movie Night" dated post almost every week that will feature what movie we will be viewing and who had chosen it. It is truly a great tradition that we started almost one year ago and one that I am sure we will be enjoying for some time...(You'll be so very surprise at the feature films that are chosen ~ and who actually chosen them.) So....
Coming soon ~ for your viewing pleasure, our "Family Movie Night" weekly post!
Thursday, February 5, 2009
Monday, February 2, 2009
Sunday, February 1, 2009
Francesca's favorite ride! (I am seeing horse back riding lessons in our future...)
Our Little Drivers...
Gavin and Francesca
This rocket ride was Annabelle's favorite!
Air-Hockey ~ I think Francesca played this game with almost every child that was there that day!
Annabelle & Scott Joe teaming up on the Jet Ski!
Mary (Gavin's Mom) and Annabelle posing for a photo!
Scott Joe and Francesca just loved this one too!
"Our Bubble Boy"
Two sisters enjoying some time together...
Now it was Francesca's turn to ride the Chuck E Cheese School Bus!