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!
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