Yesterday we had what felt like a big appointment with the Continuing Care Clinic at the SCCA. Georgia is doing well, she has put on weight (10.73kg) she's a bit taller and her skin has improved. Everyone is happy with the results the NG tube is having - the doctor however was hesitant to be too optimistic about how her body is tolerating the NG feeds because she is still on two steroids. Today, we started a week long taper of the lower gut steroid and will continue the feeds as we have been. Assuming her body continues to tolerate the feeds, we will start a taper of the upper gut steroid in two weeks when we are seen in clinic again.
The other big topic we discussed was her Sirolimus level, the goal is to keep her level between 5-10 - her past three levels have been 18, 13 and on Monday it was 16.2. The hope is that her gut is healing, allowing her body to absorb more of the drug, we have decreased her dose for a third time and will continue to check the level. The other possibility is that because she is still on the steroids they are being more absorbed which is giving a false sense of a healthy gut.
I truly feel that her gut is healing - since starting the NG feeds I have seen weight gain, speech development, coordination development, her hair has grown, her eyelashes have grown, she's taller - I have to believe that with the drug levels going up her body has the ability to absorb and utilize the nutrients - steroids or no steroids.
I'm frustrated that again I feel like we've gotten on a ride and now can't get off - the idea of tapering the NG feeds and getting rid of the tube was pushed significantly farther out than the 4-6 weeks we'd initially talked about. I said, my goal is to have it out by her second birthday... the response, well, we can always hope for that. I know that having the NG tube while we taper these steroids is a good idea, it will continue to nourish her body and give us insight to what she needs.. as with all of this however, it wasn't part of my plan.
My prayer is that this is the beginning of the end of steroids!
Wednesday, September 28, 2011
Monday, September 19, 2011
22 Months Old, 8 Months Post Transplant
Georgia, you continue to amaze me with your patience, humor and wit. This month has brought new challenges with the NG tube, none of us like it but ultimately I think it's doing the job so we're stuck with it for a while. You had a rough time adjusting to the tube and I wanted to make sure you understood this was not a permanent addition so I told you that your "line" will go ba-bye... now multiple times a day, you touch your line and say ba-bye? I also wanted to communicate to you that you are still in charge, that this pump and backpack that we're hauling around with us 19 hours a day isn't calling all of the shots - when the pump alarms (which happens far too often) we look at it and say SHHH! and No, No, No pump... you get a real kick out of this! You have the patience of a saint, sitting so still for blood draws, always willing to take your meds and waiting for me as I carry your backpack around the house.
Last week daddy and I were frustrated about something, you walked over with a pen, looked at us, said draw? and started drawing on the wall - it was the comic relief we all needed although I think you got the message that it's funny to draw on walls.. parenting, always a work in progress!
You continue to be quite the conversationalist, chatting away and repeating everything we say. You talk a lot about Aunt Leslie, or as you call her Nah. You love seeing Blake and Lauren and have taken to carrying Lauren's picture around the house, having her do everything you do.. she even came with us to Children's today, such a good cousin!
I love you more than words can say Georgia girl, you are truly an amazing child.
ba-bye?
Shh, no, no, no pump!
Happy 22 months baby girl
Friday, September 16, 2011
Boy Oh Boy!
We talk a lot about babies at our house - Georgia has a baby doll, anyone in a stroller is a baby (even if they are bigger) and she loves her new friend baby Malia. Yesterday we woke up early, I noticed I had a text message on my phone - it was from Auntie Alexis, she was in labor! I turned to Georgia and said, you are going to have two new cousins today! She was a bit confused as she only knows Blake & Lauren as her cousins so I said, there are going to be more babies.. instant smile. Two healthy, beautiful baby boys were born yesterday and today Georgia got to meet her new (yet to be named) cousins.
Wade & Alexis, congratulations, job well done... and boys, your cousin is crazy about you!
So happy with the babies
Snuggling Cousins
Yep, this baby has a nose too!
The new family of FOUR!
Saturday, September 10, 2011
Day +233
Life with the NG has brought on new challenges but even a night filled with pump alarms and getting sick didn't stop Georgia today. My girl will forever keep me going!
Thursday, September 8, 2011
Day +231
The past couple of days I've had to remind myself several times "it's in Georgia's best interest".. to have an MRI to make sure her leg is healing, to get an NG tube so her body can get the most nourishment, to keep telling her the new "line" is ok as she is crying about it again and again.
Tuesday was a very long day - because Georgia doesn't have a central line they sedate her with gas then place an IV and keep her asleep with propofal. This is the third time Georgia has had gas, and it will be the last. It's never easy watching your child be sedated but the process is made much more traumatic for a toddler who doesn't understand why a mask is being held over her face. Georgia was fighting and crying saying no, no as I tried to comfort her - she was upset going to "sleep" and was raging mad when she woke up. For the better part of two hours following sedation Georgia was hysterical and there was nothing to calm her - that isn't my daughter. As she was flailing around she pulled a few inches of her NGg tube out, when the nurse put it back down she was rightfully pissed. I knew she wouldn't like the NG but I also knew that wasn't the bulk of the problem. Once we finally made it up to the clinic following her MRI she was still hysterical, all of the clinic folks know her well and knew this wasn't typical for Georgia.. finally several nurses and our doctor asked what they used to sedate her, when I said, gas everyone went, Ohhh... I guess it isn't uncommon for kids to be very upset following a gas sedation.. if they go down mad, they wake up that way as well, it also leaves a feeling of being uncoordinated and fogginess which to a toddler is both scary and maddening - it would have been really nice to have this information beforehand.
Late yesterday evening our doctor called to let us know that Georgia's MRI looks "stable".. some of the abnormalities are stable and other have improved. Her feeling is that we shouldn't need to have another MRI for at least six months - all good news. Due to the fact that the tumor she had in October was so destructive, she had three biopsies/surgeries which caused scar tissue and that the bone is re-generating there is a high probability that an MRI will never look totally normal.
The NG has been a big adjustment for all of us but particularly for Georgia, overall it has been really upsetting for her. She is scared when I hook her up, upset when I change her shirt or have to adjust the line at all. Bath time is traumatic because my girl who usually says more when I am pouring water over her head doesn't want her face to get wet. At this point she won't turn her head to the right and keeps looking at Brian and me, touching her face ever so gently saying, line? Her body is having a hard time adjusting to it too, she has been sneezing a ton and it's clear that her sinuses are irritated. The important thing is that so far her body seems to be tolerating the formula well, something I was fearful of with a highly allergic kiddo. Georgia's special "caviar" of formula can only be out for four hours so we're getting into a new routine of replenishing the bag through the night. We're working on cutting down the feed time as we ramp up the feed rate but right now she's hooked up 16 hours a day. It's hard to see Georgia scared of this new addition but I still believe we made the right decision, her body needs nourishment to heal, grow and thrive - that is certainly in her best interest.
Tuesday was a very long day - because Georgia doesn't have a central line they sedate her with gas then place an IV and keep her asleep with propofal. This is the third time Georgia has had gas, and it will be the last. It's never easy watching your child be sedated but the process is made much more traumatic for a toddler who doesn't understand why a mask is being held over her face. Georgia was fighting and crying saying no, no as I tried to comfort her - she was upset going to "sleep" and was raging mad when she woke up. For the better part of two hours following sedation Georgia was hysterical and there was nothing to calm her - that isn't my daughter. As she was flailing around she pulled a few inches of her NGg tube out, when the nurse put it back down she was rightfully pissed. I knew she wouldn't like the NG but I also knew that wasn't the bulk of the problem. Once we finally made it up to the clinic following her MRI she was still hysterical, all of the clinic folks know her well and knew this wasn't typical for Georgia.. finally several nurses and our doctor asked what they used to sedate her, when I said, gas everyone went, Ohhh... I guess it isn't uncommon for kids to be very upset following a gas sedation.. if they go down mad, they wake up that way as well, it also leaves a feeling of being uncoordinated and fogginess which to a toddler is both scary and maddening - it would have been really nice to have this information beforehand.
Late yesterday evening our doctor called to let us know that Georgia's MRI looks "stable".. some of the abnormalities are stable and other have improved. Her feeling is that we shouldn't need to have another MRI for at least six months - all good news. Due to the fact that the tumor she had in October was so destructive, she had three biopsies/surgeries which caused scar tissue and that the bone is re-generating there is a high probability that an MRI will never look totally normal.
The NG has been a big adjustment for all of us but particularly for Georgia, overall it has been really upsetting for her. She is scared when I hook her up, upset when I change her shirt or have to adjust the line at all. Bath time is traumatic because my girl who usually says more when I am pouring water over her head doesn't want her face to get wet. At this point she won't turn her head to the right and keeps looking at Brian and me, touching her face ever so gently saying, line? Her body is having a hard time adjusting to it too, she has been sneezing a ton and it's clear that her sinuses are irritated. The important thing is that so far her body seems to be tolerating the formula well, something I was fearful of with a highly allergic kiddo. Georgia's special "caviar" of formula can only be out for four hours so we're getting into a new routine of replenishing the bag through the night. We're working on cutting down the feed time as we ramp up the feed rate but right now she's hooked up 16 hours a day. It's hard to see Georgia scared of this new addition but I still believe we made the right decision, her body needs nourishment to heal, grow and thrive - that is certainly in her best interest.
Blake & Lauren came over in their Team Georgia
shirts to cheer up their cousin.. it worked!
Monday, September 5, 2011
Day +228
Tomorrow is going to be a long day.. someone is coming to the house at 10am to teach us how to use the pump for the NG feeds, we have to be at Children's by 12:45pm and Georgia is scheduled to have an MRI at 2pm, this typically takes close to an hour.. after she's done and awake we have to go up to the clinic for an hour long teach on caring for the NG tube. All the while Georgia can't eat beforehand and likely won't feel like eating afterward. Brian and I are both sad about the NG tube but I think we're both more scared of something new. It's time to solve this weight issue so we'll manage this new addition. Georgia was patting her chest (where her central line was) last night saying ba-bye, I told her she was going to get a different line and it was going to be in her nose.. since then she keeps looking at me touching her nose and saying, nose? It breaks my heart that she has to again rise to the challenge but she will, it's what she does.
What we need to do is focus on the major hurdle of getting another "healthy, healing" MRI - Georgia hasn't been giving me any indication that she has discomfort in her leg but MRI's are terrifying just the same. Please send thoughts and prayers for a healing leg with healthy cells.
Saturday, September 3, 2011
Mee, Nee & Baby
Our good friends Megan and Tony welcomed baby Malia on August 27th, but long before her arrival Georgia was excited about the baby. First of all Georgia loves Megan, or as she calls her Mee - she often wants to call her on the phone and gets so excited when I tell her we're going to see her. Things became even more exciting when we started talking about Megan's baby, Georgia would point to her tummy and say, baby!
I told Georgia at bedtime on Thursday that when she woke up we were going to see Megan and the baby.. she fell asleep saying baby, Mee, baby... she woke up at midnight looked at me and said, baby? When morning came the first word out of her mouth.. baby! We visited the whole Muhlenkamp family yesterday and Georgia loved seeing baby Malia, pointing to her toes, fingers and even giving her a kiss.. she was thrilled to see Mee and Tony too, or as she says, Nee.
Congratulations to Mee and Nee - we can't wait for the adventures these girls will have!
I told Georgia at bedtime on Thursday that when she woke up we were going to see Megan and the baby.. she fell asleep saying baby, Mee, baby... she woke up at midnight looked at me and said, baby? When morning came the first word out of her mouth.. baby! We visited the whole Muhlenkamp family yesterday and Georgia loved seeing baby Malia, pointing to her toes, fingers and even giving her a kiss.. she was thrilled to see Mee and Tony too, or as she says, Nee.
Congratulations to Mee and Nee - we can't wait for the adventures these girls will have!
Sweet Baby Malia
Toes
Kisses
Mee, Nee and Baby
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