Tomorrow is Day 90 which means it has been 3 months since Reese's transplant. I certainly am thankful for every day we put between her and her transplant...and her chemo....and her surgery...and her diagnosis. Multiple times in the last several months, she has seen medical staff (docs, nurses, etc) who saw her in the beginning and have marveled at her progress and personality. We have heard a lot of "She has exceeded our expectations" or "I never expected her to look this good now when we first met her"...etc etc.. So though I "forget" (I could never REALLY forget but you get lost in the every day and the details of what she looked like when merge together a little) how far she has come sometimes, I praise God for the many blessings he has given us during this storm. We are still bumping along a lot of the time and there are still a lot of things to get through, but we are gradually trying to "normalize" our life despite the fact that we are isolated a bit.
Nonetheless, I recognize that I will NEVER be the same. This has changed me. I no longer have the invincibility complex of youth. Reese's tumor is so rare (presentation, age, pathology, you name it) that we don't even have a real name for it. It was initially called an ependymoma, but second-opinions on the path decided that it didn't fit perfectly so now she has "a high-grade, malignant neuroepithelial tumor." I have tried to read every medical journal out there and have not found an article that exactly matches (or even gets close) Reese's diagnosis. She had several side effects during treatment that were so rare that docs barely even mention them when discussing risks. We heard several times, "we have never seen this happen before..." While in school/residency, we always dreaded taking care of doctor's/nurse's kids because inevitably crazy stuff happened with them. Reese has fit the bill in some ways! I know that God has carried us through every hurdle and obstacle. I felt in my heart that she was going to pull through each one, but my heart spent a lot of time beating way too fast. Throughout, we have had to trust God for Reese's life and well-being and it has truly been a walk by faith...not being able to see one step ahead of us at some times. In my limited mind, I think he allowed some things to be unknown or hard because He wanted to keep us depending on Him.
This last year has taken its toll on our bodies, our minds, emotions, etc. We are adjusting now, trying to hit a new stride. I'm working sporadically as needed (just started last week) and Brian is trying to finish out his last year of fellowship/research program strong. We are doing a juggling act making sure all the kids are covered when anyone leaves the house (someone is always here with Reese). It's hard a lot of the time. All our kids are needy of us physically and emotionally so there isn't a lot of downtime.
As I said before, something like this changes you. I will never be "Mindy, mom of three." I am now a "cancer mom." My brain processes everything differently now. I had a unique view going in because of my medical background which separated me somewhat from others that I met going through the same thing. Also the fact that my child was an infant...our challenges looked different than the older, verbal, walking kids on the units. I have seen God's hand during Reese's journey, providing/answering in miraculous ways. Providing before we knew to ask. I have just recently spent time asking myself, "How does God want me to redeem Reese's cancer?" How do I give this to God and allow Him to make all things beautiful in His time? Obviously, Reese is doing well and I thank Him for that. I just pray that the changes in me are for His Glory...and that our family will be different and better because of this. And that He will show us how to love others and be the hands/feet of Christ to them....
On a total side note, today I was home with Reese and Philip while Brian took Charlotte for her first swim of the summer. I was sitting in the floor with Reese and Philip kept coming and literally jumping/leaping/falling between us into my arms. He's a mischievous, get-into-everything-he-can boy, but he's a lover too. He wanted me to cuddle him and tickle him (because I was paying too much attention to Reese). Reese hates pacis and firmly refuses them. However, she saw the paci in Philip's mouth today as he lounged back in my arms between the two of us. The fiercest look of determination came over her face as she pegged him down with one arm and went for his paci with the other. He was giggling because the slightest touch tickles him. I kept batting her hand away, literally fighting her to keep her from taking his paci out (supposed to protect her from germs...hahah). She would not give it up. Finally, I let her take it one time (sanitizer ready) to see what she would do with it. She just turned it over in her hands and played with it a little. This burst of "fight" I have not seen in her much since her diagnosis. Determination, yes, but aggressive fight, not really. Before she was diagnosed (sub-5 months), I always said that she was going to be a strong woman like her big sister and I was going to have worry about Philip being taken advantage of more than the girls. During her recovery, she has been strong but sweet, happy, content to play with whatever. Today, I saw a competitive streak....like I used to see. Can't wait to see how she continues to blossom in the coming months. In the end, Philip's sisters are going to toughen him more than any brothers could. He's rarely cries when he falls but he wrestles with his big sister daily. Love watching these little people grow!
We go back to clinic on Tuesday and have to make some decisions soon about Reese's line. She is doing great..vomiting still once or twice a day but getting higher amounts of formula every day. Her major issue now is diarrhea which started a week and a half ago. Her bottom is breaking down again so please pray that this resolves soon. Her brother and sis have had runny noses for the same amount of time so hopeful that this is just something simple that will resolve. Reese doesn't have a fully functional immune system so anything can be scary sometimes. Please continue to pray for her feeding and her development. She is a dancing machine these days and gets mad if she doesn't get to sit up all the time.
She doesn't like to bear a lot of weight in crawling position or standing position but we are working on it!
And as always please pray for those MRIs. Her next will be August 6!
Sunday, June 24, 2012
Monday, June 11, 2012
Airplanes, surprises, chicken fingers and Krispy Kremes
One day after my last post, I had my first long afternoon home with all 3 kiddos ALONE. After a few potty mishaps, tantrums, attempts to keep everyone from injury, etc while taking care of Reese, I must have looked particularly haggard when Brian arrived home. Both of us miss "normal" life stuff, like traveling, eating out as a complete family, going to church as a complete family, going for a walk, etc, etc. Since we have transitioned out of inpatient life and I am home and inside almost every day, I have felt a mixed bag of things...."crazy" being one of them. I was also stressed about finding a new babysitter to help me in the mornings after our awesome babysitter is finished working with us at the beginning of August. (Please pray for that for us!) I had been trying to look online while the kids played quietly....hahahah
So Brian looked at me and said, "Why don't you go to your sister's baby shower this weekend?" (As in my sister in Georgia, 650+miles from our home Georgia). I laughed initially but within an hour, we had a rough sketch of how this could work. After some debate, it was decided that Philip could fly free with me, Brian's mom could pick me up at the airport, I could surprise my whole family on Saturday morning and I could fly back on Sunday.
We had Reese's clinic appt on Tuesday (the day after we hatched this crazy plan), so we decided to wait to make sure everything was good with her before I booked a flight. We proceeded to have our best clinic appt in a long time because Reese had gained an entire POUND in one week and it was decided to stop her TPN for a week to see how she would do. We were also given clearance to stop her fluconazole (a preventative medicine for transplant patients) on Sunday (Day 75 post transplant). If you've ever been chronically sick or taken care of a sick person, it is ALWAYS an exciting thing to simplify medications or step down the intensity of therapies (especially when it is done because the person is getting better).
After the appt, we decided that I was going. Sounds easy, but this required lots of last minute booking of flights, moving of appts, Brian getting things covered at work so he could be home all weekend, etc. After a 3 hour frenzy, I had a flight, Brian was covered, I had a ride home from the airport and a fun weekend planned.
Philip and I began our journey by getting up at 515am and going to the airport on Friday. I drove myself and rode the shuttle, etc.... something I rarely do alone and especially not with a child. (I feel like a real woman now). Philip was so confused and overwhelmed but certainly enjoyed all the attention that a cute redheaded toddler receives. Since Reese's diagnosis when they were 5 months old, he has ALWAYS slept in his bed for at least 2 naps a day and overnight. He only leaves the house for 4 hours max at a time and he almost never misses a nap or a meal. He eats, sleeps and plays at the same time. He has never been apart from Charlotte and/or Reese for more than an hour or so. He always has several familiar faces around him. He is the king of his toys and his environment (as long as princess Charlotte isn't dominating...which is actually fairly often...ha). All of these new sights and sounds were a bit crazy for him. Charlotte had been on an airplane at least 5 times by the time she was his age and we were always dragging her around during her nap times, making her sleep in carseats, etc. She slept in a pack in play, etc.
Long story short, Philip and I had some adventures. I enjoyed one on one time with my little boy that usually gets taken care of by someone who is helping me because he just needs to be fed and loved (and kept from jumping off furniture). Charlotte demands my attention and Reese needs special care so this was a fun time for me to be with only him. Philip on right, preparing equipment for takeoff.
Upon landing, Brian's mom picked us up and we headed straight to Krispy Kreme. She is my partner in dessert crime. This may be the secret to our good relationship :) I didn't even have to say anything because she knew. We missed the "hot" sign by about 20 minutes but they were still delish! From there, it was Zaxby's for lunch. (I really did come to GA to see family but I really enjoyed all the fringe benefits.. ;) We had fun hanging out and I headed to my hometown the next morning....Again BRIGHT and EARLY. Philip was very freaked out by sleeping in a pack in play in a strange place so I cannot say sleep was one of the highlights of my trip...but I digress.
I surprised both sisters, my mom, my grandmother, and a whole host of aunts and cousins. It was great to see them. I got to see both my new nephews (one in each of my sister's tummies) due a month apart, hang out with my nearly 2 year old nephew and let Philip explore and enjoy where I grew up. He warmed up to everyone fairly quickly and had a good time.
We headed back to Atlanta for our flight on Sunday and ended up being delayed by 2 hours on our trip home. Fortunately, Brian's mom was with me so we just had an extended time at the airport and Philip was a champ. He slept wonderfully on the plane, barely woke up for his transfer to the stroller and carseat and we made it home just after 11pm. Everyone was super nice to the tired looking woman with a baby (me), including an airline worker who helped me to my seat without being asked, folding my stroller and carrying my bag, the nice lady next to us who helped me off the plane and the people waiting for the shuttle who helped me get my stroller on the bus.
Back home at the ranch, Brian could not leave the house because Reese can't leave. Charlotte enjoyed lots of arts and crafts (her daddy is better at this than me actually), a few good disney movies, and probably a few "special treats." Reese was an ALL STAR and only got sick once the whole time I was gone....which has not happened in a LONG time. Of course, she got sick 15 minutes after I got home (I wasn't even touching her) so Brian now blames me ;) She was able to increase the volume of her feeds as well. She has continued to do well today. I'm excited to see how much she weighs tomorrow at clinic.
Tomorrow she will get some long infusions of meds, etc. and I'm hopeful that that will go well.
I'm really tired from traveling over a short period of time with a child and stepping back into life today, but I'm glad for the chance to get to do something fun this weekend. Very thankful for my husband's initiation of this and his willingness to stay inside for 3 long days with our 2 girls so I could go.
HIGHLIGHTS/PIX FROM TRIP BELOW. KRISPY KREMES NOT PICTURED BECAUSE I DIDN'T WASTE TIME WITH THE CAMERA....(HA!)
So Brian looked at me and said, "Why don't you go to your sister's baby shower this weekend?" (As in my sister in Georgia, 650+miles from our home Georgia). I laughed initially but within an hour, we had a rough sketch of how this could work. After some debate, it was decided that Philip could fly free with me, Brian's mom could pick me up at the airport, I could surprise my whole family on Saturday morning and I could fly back on Sunday.
We had Reese's clinic appt on Tuesday (the day after we hatched this crazy plan), so we decided to wait to make sure everything was good with her before I booked a flight. We proceeded to have our best clinic appt in a long time because Reese had gained an entire POUND in one week and it was decided to stop her TPN for a week to see how she would do. We were also given clearance to stop her fluconazole (a preventative medicine for transplant patients) on Sunday (Day 75 post transplant). If you've ever been chronically sick or taken care of a sick person, it is ALWAYS an exciting thing to simplify medications or step down the intensity of therapies (especially when it is done because the person is getting better).
After the appt, we decided that I was going. Sounds easy, but this required lots of last minute booking of flights, moving of appts, Brian getting things covered at work so he could be home all weekend, etc. After a 3 hour frenzy, I had a flight, Brian was covered, I had a ride home from the airport and a fun weekend planned.
Philip and I began our journey by getting up at 515am and going to the airport on Friday. I drove myself and rode the shuttle, etc.... something I rarely do alone and especially not with a child. (I feel like a real woman now). Philip was so confused and overwhelmed but certainly enjoyed all the attention that a cute redheaded toddler receives. Since Reese's diagnosis when they were 5 months old, he has ALWAYS slept in his bed for at least 2 naps a day and overnight. He only leaves the house for 4 hours max at a time and he almost never misses a nap or a meal. He eats, sleeps and plays at the same time. He has never been apart from Charlotte and/or Reese for more than an hour or so. He always has several familiar faces around him. He is the king of his toys and his environment (as long as princess Charlotte isn't dominating...which is actually fairly often...ha). All of these new sights and sounds were a bit crazy for him. Charlotte had been on an airplane at least 5 times by the time she was his age and we were always dragging her around during her nap times, making her sleep in carseats, etc. She slept in a pack in play, etc.
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| Philip hydrating for the flight |
Long story short, Philip and I had some adventures. I enjoyed one on one time with my little boy that usually gets taken care of by someone who is helping me because he just needs to be fed and loved (and kept from jumping off furniture). Charlotte demands my attention and Reese needs special care so this was a fun time for me to be with only him. Philip on right, preparing equipment for takeoff.
Upon landing, Brian's mom picked us up and we headed straight to Krispy Kreme. She is my partner in dessert crime. This may be the secret to our good relationship :) I didn't even have to say anything because she knew. We missed the "hot" sign by about 20 minutes but they were still delish! From there, it was Zaxby's for lunch. (I really did come to GA to see family but I really enjoyed all the fringe benefits.. ;) We had fun hanging out and I headed to my hometown the next morning....Again BRIGHT and EARLY. Philip was very freaked out by sleeping in a pack in play in a strange place so I cannot say sleep was one of the highlights of my trip...but I digress.
I surprised both sisters, my mom, my grandmother, and a whole host of aunts and cousins. It was great to see them. I got to see both my new nephews (one in each of my sister's tummies) due a month apart, hang out with my nearly 2 year old nephew and let Philip explore and enjoy where I grew up. He warmed up to everyone fairly quickly and had a good time.
We headed back to Atlanta for our flight on Sunday and ended up being delayed by 2 hours on our trip home. Fortunately, Brian's mom was with me so we just had an extended time at the airport and Philip was a champ. He slept wonderfully on the plane, barely woke up for his transfer to the stroller and carseat and we made it home just after 11pm. Everyone was super nice to the tired looking woman with a baby (me), including an airline worker who helped me to my seat without being asked, folding my stroller and carrying my bag, the nice lady next to us who helped me off the plane and the people waiting for the shuttle who helped me get my stroller on the bus.
Back home at the ranch, Brian could not leave the house because Reese can't leave. Charlotte enjoyed lots of arts and crafts (her daddy is better at this than me actually), a few good disney movies, and probably a few "special treats." Reese was an ALL STAR and only got sick once the whole time I was gone....which has not happened in a LONG time. Of course, she got sick 15 minutes after I got home (I wasn't even touching her) so Brian now blames me ;) She was able to increase the volume of her feeds as well. She has continued to do well today. I'm excited to see how much she weighs tomorrow at clinic.
Charlotte's artwork
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| Daddy's girls |
Tomorrow she will get some long infusions of meds, etc. and I'm hopeful that that will go well.
I'm really tired from traveling over a short period of time with a child and stepping back into life today, but I'm glad for the chance to get to do something fun this weekend. Very thankful for my husband's initiation of this and his willingness to stay inside for 3 long days with our 2 girls so I could go.
HIGHLIGHTS/PIX FROM TRIP BELOW. KRISPY KREMES NOT PICTURED BECAUSE I DIDN'T WASTE TIME WITH THE CAMERA....(HA!)
 |
| Philip walking the same path that Charlotte always does when she comes to visit Gran and Pepaw. She wasn't even there to show him how. I guess they have an explorer gene. |
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| Philip finally warmed up at the shower and making his rounds to meet all the ladies. |
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| Looking up to his big cousin. |
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| Thoroughly enjoying hanging out with the guys and looking at the big machines. |
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| Talking to Pepaw |
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| Hanging out with Aunts and Uncles |
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| Cousins |
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| All of 4 of my parents' grandsons...2 in utero.. |
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| Loving Granny |
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| Granny and Papa |
Sunday, June 3, 2012
And now I remember.....
So after being home for 5 weeks (as of Thursday), I remember why I have never started a blog. Time to sit down and write is nearly non-existent! It has been really nice to sleep in our own beds and not have vital signs done every 4 hours around the clock. Nonetheless, I'm not sure that our sleep or rest has improved that much.
Day to day, it's hard to see the improvement in Reese because it is so gradual. Looking back at our discharge date, Reese is tolerating a LOT more formula in her tummy. Her TPN has been weaned back a little and she has gained a little bit of weight. We are still dealing with the same old vomiting though which *ALMOST* feels normal because we have dealt with it so constantly since September. We always have a stack of kitchen towels nearby and we can continue conversations while she gets sick because it's the way it has been for so long.
We did recently switch back to her old formula which is less broken down and higher calorie. This is a good step because we can hopefully move more quickly towards getting her off of TPN. Every change we make though is sometimes a step backwards because she has to adjust, etc. I'm very hopeful that we are a few weeks away from saying adios to her TPN. Once she is off TPN, we can start talking about getting her central line out which would be a huge move towards freedom for Reese. Currently, she can't take a bath because of it and she hates having the dressing changed every week. It is also another thing that she has to deal with while trying to catch up on all her milestones. (Imagine having a tube coming out of your chest and being stuck under your arm, etc, when you're trying to re-learn rolling over, etc.
Reese's hair started sprouting on Mother's Day and currently, it appears that it's going to be very dark....which is funny bc she had red hair before. We had heard about this phenomenon after chemo, especially transplant chemo. We are interested to see what she will look like once it's all in. She looks precious with thick eyelashes and dainty little eyebrows. Her hair is probably a quarter inch long right now. Across the room, it looks like a 5 o'clock shadow on a man who hasn't shaved ;) We've jokingly been calling her "Snow White" (we talk a lot of princess around here with our 3 year old daughter currently in full-fledged princess mode) because she has ruby red lips, skin as white as snow and hair as dark as ebony. We were thinking she was going to be an Ariel before :)
Her physical, occupational and developmental therapies finally got started this week. Without their help though, she has started rolling over some and can almost sit up from lying on her back (she has strong abs!). She has tried to adapt because of her not liking to be on her tummy so instead of trying to sit up from a tummy position, she tries so hard to get up from her back. We are working with her to strengthen her arms, shoulders, back and legs so she can stand and crawl, etc. The rolling is getting a lot better and she is a good sitter now. Other recent tricks are peek a boo, some more sounds, "Yay", clapping, etc. She has even been eating tiny tiny tastes of babyfood.
My cousin, Morgan, who has been with us this whole year, moved back home today. So we are truly on our own now. Morgan has been a tremendous help to us this year and our kids love her. Charlotte keeps insisting that she's just going to GA and will be "right back." We will all miss her and are so thankful for her servant's heart towards us this year. She has served and loved us sacrificially this year and we enjoyed having her here with us. Charlotte and Philip have some cool dance moves, songs, games, etc thanks to her :)
Probably the most frustrating thing right now is the final potty training push with Charlotte. She is seriously the most stubborn 3 year old in the world. I know there are probably some out there who would advocate for their own adorable preschooler for this title but Charlotte definitely wins top prize. Trust me. The mold has been broken. I honestly think her main goal for most things is to make sure that all of the "tricks" of parenting that her mommy learned as a pediatrician could be blown out of the water. My bag of tricks is empty on this one. We basically have at least 5 fights a day to get her in the bathroom. At least a few trips result in wet hair (yes, from reaching into the toilet), water on the floor, paper on the floor, wet pants, or worse. Oh, well :)
Philip spent the first 5 months of his life, lying flat and smiling. I seriously thought it would be good if he considered walking by the age of 2 years. Shortly thereafter, he decided to sit, crawl, stand, cruise, walk, run and dive-bomb off of furniture. Seriously, he jumps off headfirst if there is anyone anywhere near him. He climbs stairs, flies down slides, etc. No fear....Charlotte was the same way. It's cool to say your kid is agile and coordinated, etc, but it is NOT easy to parent. Whatever happened to docile little kids who sit quietly reading books? hahah not in my house! He has also decided at the tender age of 14 months that he no longer likes the baby swing. He wants to sit in the big one...
Today, we literally turned our backs for 5 seconds while Charlotte and Philip looked out the back screen door (as they do frequently). I walked around the corner to check on Reese and heard Brian yell for Charlotte. Both kids were on the back deck. Charlotte had opened the door (holding it open for her brother, how sweet...ha) and Philip had crawled out/walked out onto the deck. Charlotte had also managed to get her grocery cart full of babies out there! Needless to say, Charlotte has been educated on NOT going outside without permission and we may need to put a tracker on Philip.
I'm rambling a bit because I've written this in 5-6 increments of time. Thankful for everyone's encouragement to us. Please continue to pray for Reese and all of us as we try to rehabilitate her back to a place where she can do all the normal things her sibs do. It will take awhile but we are hopeful that she can walk through the door in kindergarten with her brother. We hope that next summer, we will get to go on a fun trip with all kids eating food by mouth. In some ways, this part is harder than the intense part because it is slow and life is happening all around us while we get through the tasks of each day. Reese can't go outside or go out except to the clinic. We also have to screen visitors and make sure no one is sick etc. This limits kids who can visit and Charlotte is especially sad about the lack of little people in her life. Please also pray for Reese's next scan (probably in August) and for all the ones to come. We PRAY that we are cancer-free FOREVER! WE are also praying that Reese's immune system will recover on the early end of things. It should take 6-9 months from March 27, 2012. We are hopeful to go back for a visit with our family in Georgia soon (as in fall/Christmas time). We haven't seen a lot of people in GA since August of 2011 and that is an eternity when you have growing babies. I am also LONG overdue for Krispy Kremes and Zaxbys (sorry Tony Horton, I'll work out extra hard tonight for that comment).
Will try to update more frequently but thanks to all those who have prayed and loved us so diligently!
Day to day, it's hard to see the improvement in Reese because it is so gradual. Looking back at our discharge date, Reese is tolerating a LOT more formula in her tummy. Her TPN has been weaned back a little and she has gained a little bit of weight. We are still dealing with the same old vomiting though which *ALMOST* feels normal because we have dealt with it so constantly since September. We always have a stack of kitchen towels nearby and we can continue conversations while she gets sick because it's the way it has been for so long.
We did recently switch back to her old formula which is less broken down and higher calorie. This is a good step because we can hopefully move more quickly towards getting her off of TPN. Every change we make though is sometimes a step backwards because she has to adjust, etc. I'm very hopeful that we are a few weeks away from saying adios to her TPN. Once she is off TPN, we can start talking about getting her central line out which would be a huge move towards freedom for Reese. Currently, she can't take a bath because of it and she hates having the dressing changed every week. It is also another thing that she has to deal with while trying to catch up on all her milestones. (Imagine having a tube coming out of your chest and being stuck under your arm, etc, when you're trying to re-learn rolling over, etc.
Reese's hair started sprouting on Mother's Day and currently, it appears that it's going to be very dark....which is funny bc she had red hair before. We had heard about this phenomenon after chemo, especially transplant chemo. We are interested to see what she will look like once it's all in. She looks precious with thick eyelashes and dainty little eyebrows. Her hair is probably a quarter inch long right now. Across the room, it looks like a 5 o'clock shadow on a man who hasn't shaved ;) We've jokingly been calling her "Snow White" (we talk a lot of princess around here with our 3 year old daughter currently in full-fledged princess mode) because she has ruby red lips, skin as white as snow and hair as dark as ebony. We were thinking she was going to be an Ariel before :)
Her physical, occupational and developmental therapies finally got started this week. Without their help though, she has started rolling over some and can almost sit up from lying on her back (she has strong abs!). She has tried to adapt because of her not liking to be on her tummy so instead of trying to sit up from a tummy position, she tries so hard to get up from her back. We are working with her to strengthen her arms, shoulders, back and legs so she can stand and crawl, etc. The rolling is getting a lot better and she is a good sitter now. Other recent tricks are peek a boo, some more sounds, "Yay", clapping, etc. She has even been eating tiny tiny tastes of babyfood.
My cousin, Morgan, who has been with us this whole year, moved back home today. So we are truly on our own now. Morgan has been a tremendous help to us this year and our kids love her. Charlotte keeps insisting that she's just going to GA and will be "right back." We will all miss her and are so thankful for her servant's heart towards us this year. She has served and loved us sacrificially this year and we enjoyed having her here with us. Charlotte and Philip have some cool dance moves, songs, games, etc thanks to her :)
Probably the most frustrating thing right now is the final potty training push with Charlotte. She is seriously the most stubborn 3 year old in the world. I know there are probably some out there who would advocate for their own adorable preschooler for this title but Charlotte definitely wins top prize. Trust me. The mold has been broken. I honestly think her main goal for most things is to make sure that all of the "tricks" of parenting that her mommy learned as a pediatrician could be blown out of the water. My bag of tricks is empty on this one. We basically have at least 5 fights a day to get her in the bathroom. At least a few trips result in wet hair (yes, from reaching into the toilet), water on the floor, paper on the floor, wet pants, or worse. Oh, well :)
Philip spent the first 5 months of his life, lying flat and smiling. I seriously thought it would be good if he considered walking by the age of 2 years. Shortly thereafter, he decided to sit, crawl, stand, cruise, walk, run and dive-bomb off of furniture. Seriously, he jumps off headfirst if there is anyone anywhere near him. He climbs stairs, flies down slides, etc. No fear....Charlotte was the same way. It's cool to say your kid is agile and coordinated, etc, but it is NOT easy to parent. Whatever happened to docile little kids who sit quietly reading books? hahah not in my house! He has also decided at the tender age of 14 months that he no longer likes the baby swing. He wants to sit in the big one...
Today, we literally turned our backs for 5 seconds while Charlotte and Philip looked out the back screen door (as they do frequently). I walked around the corner to check on Reese and heard Brian yell for Charlotte. Both kids were on the back deck. Charlotte had opened the door (holding it open for her brother, how sweet...ha) and Philip had crawled out/walked out onto the deck. Charlotte had also managed to get her grocery cart full of babies out there! Needless to say, Charlotte has been educated on NOT going outside without permission and we may need to put a tracker on Philip.
I'm rambling a bit because I've written this in 5-6 increments of time. Thankful for everyone's encouragement to us. Please continue to pray for Reese and all of us as we try to rehabilitate her back to a place where she can do all the normal things her sibs do. It will take awhile but we are hopeful that she can walk through the door in kindergarten with her brother. We hope that next summer, we will get to go on a fun trip with all kids eating food by mouth. In some ways, this part is harder than the intense part because it is slow and life is happening all around us while we get through the tasks of each day. Reese can't go outside or go out except to the clinic. We also have to screen visitors and make sure no one is sick etc. This limits kids who can visit and Charlotte is especially sad about the lack of little people in her life. Please also pray for Reese's next scan (probably in August) and for all the ones to come. We PRAY that we are cancer-free FOREVER! WE are also praying that Reese's immune system will recover on the early end of things. It should take 6-9 months from March 27, 2012. We are hopeful to go back for a visit with our family in Georgia soon (as in fall/Christmas time). We haven't seen a lot of people in GA since August of 2011 and that is an eternity when you have growing babies. I am also LONG overdue for Krispy Kremes and Zaxbys (sorry Tony Horton, I'll work out extra hard tonight for that comment).
Will try to update more frequently but thanks to all those who have prayed and loved us so diligently!
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