Avery's Audiology Dr called today from St Jude and she wants to move forward with getting her fitted for hearing aides. Her hearing deteriorated since the last hearing test was done in May. This pushed her over the threshold and she is now a prime candidate for hearing aides. We meet with the therapists tomorrow to discuss her plan for moving forward. Being home is a great help I think and can't wait to see how she develops with the comfort of home surrounding her.
Chemo also arrived today. I was really excited to see the FedEx man outside the door -thinking maybe someone sent something cool. But instead I got a box marked "perishable" and instructions to refrigerate asap. Ugh. What a downer.
Avery and I have a busy day ahead of us that includes laundry and a trip to Walmart to pick up some essentials. We may even swing by our new friend Lucy's house to drop off some much needed headbands and hats...Lucy is starting to lose her hair. We can't wait for daddy to get home as he promised us some much deserved frozen custard....man we love our frozen custard.
Can't wait to see everyone on Saturday. One of Jeremy's customers gave Avery a bubble machine -- let me tell you that will be a big hit with the kiddos and we can't wait to break it out! I know everyone already knows this...but just in case I thought I would mention it....if you or your kids aren't feeling so hot this weekend, please save your visit for another time. We will be here and up for visitors any time - so if you aren't feeling 100% - we understand (and appreciate) you waiting to visit. As much as we want to say she is doing good -- she is still on chemo and very susceptible to being sick and not being able to fight off an infection. Oh and we will probably be psycho about the hand washing / hand sanitizing on Saturday -- no offense, I will be asking Nana if she washed her hands just as often as anyone else! Just a forewarning!
Kisses from Us!
Jenn & Avery
Avery's Journey - Childrens Brain Cancer
Tuesday, July 27, 2010
Monday, July 26, 2010
It's Official
We made it home.
We left a day later than we were planning, but we finally made it home on Saturday evening. The child that was in surgery before us ended up taking a lot longer than they anticipated so we weren't able to get in for surgery until 2:30 on Friday. (yes we arrived at 7am) After the 30 min surgery to remove all of the screws, they hooked her up for her hearing test. We got the results, however they weren't able to compare them to 2 months ago when she had it done so we aren't really sure if her hearing has gotten worse. Bottom line is that she will need hearing aides at some point but until she is talking, we are not in any hurry. We will discuss our options when we go back in mid October and she will most likely have them by Christmas.
Surgery was quick and simple. Two of the feducials had definitely worked their way out of the skull so they had to come out. The other was doing fine, but they removed it anyway. She now has 3 shaved spots on her head to match the bald spot in the back of her head from radiation. She looks like a 3 year old that got a hold of the scissors...but that's why we made so many hats, headbands and bows!
Due to the surgery, they postponed the start of oral chemo and we will begin that on Friday. We have appointments this week to meet with the county to do evaluations and make a plan for therapies moving forward as well. She has been doing really well at home so far. She has all these toys that she hasn't seen since Christmas and boy is she having a ball! We moved all of her stuff upstairs to the big room so she can play on carpet until she has better stability. She still loves climbing, so on and off the couch, her chairs, the stairs -- anything she can pull herself up on. We really need some of those jungle gym wedges so she can climb!
This week we are attempting to ease back into our life, slightly adjusted. I spent all day yesterday packing up outgrown things, rearranging for new things, and trying to make it all efficient. It is amazing how much room her line change supplies and meds take up!! Jeremy worked on the yard and cars of course. And we checked out a new church down in Olathe. We really liked it and they had a great children's area set up - lots of security and like 10 different age group rooms. We are going to put her in with the 6-12 month olds as they are crawlers and much more her speed at this point. They had coffee, which is all it really takes to get Jeremy there so we are set!
We are really looking forward to Saturday and to seeing everyone that can make it. Avery turned 18 months old last Wednesday and so we are celebrating her birthday as best we can. She was cheated out of that 1st birthday party! It's an open house, so come and go as you please and stop over whenever you get the chance! Avery has turned into quite the snuggler in the last few months...so if you crave some lovin' - I suggest stopping by!
Only 2 things are missing from the Christiansen House...Jersey Anne and Maple Jo! They should be here on Friday and boy let me tell you - we can't wait! Cy really misses his girlfriend/best friend. They've been spoiled rotten while we were away so coming home won't be nearly as fun as they think it will be, but we'll try to spoil them just a bit too. It has been great to not have to worry about them the last 7 months and to know they were being taken care of. So a great big "Thank You" goes out to Aunt Lori & Uncle Bob, Rob & Amy, Nana & GJ, and Dan for taking on our other kids!
Jeremy left for work this morning kissing both of his girls goodbye and knowing that a 15 minute drive was the only thing separating us. I think his week will be a great one, no matter how awful the heat is.
We'll continue to keep everyone updated as we go through Chemo these next 6 months. She has such a long road still ahead of her, but we are so grateful that we'll be able to do the next part from the comforts of home. So for now, scans and spinal fluid are clean. Counts are hovering in the 1200 range and oral chemo is around the corner. But the best thing is that my little girl - is home.
Love,
Jenn
We left a day later than we were planning, but we finally made it home on Saturday evening. The child that was in surgery before us ended up taking a lot longer than they anticipated so we weren't able to get in for surgery until 2:30 on Friday. (yes we arrived at 7am) After the 30 min surgery to remove all of the screws, they hooked her up for her hearing test. We got the results, however they weren't able to compare them to 2 months ago when she had it done so we aren't really sure if her hearing has gotten worse. Bottom line is that she will need hearing aides at some point but until she is talking, we are not in any hurry. We will discuss our options when we go back in mid October and she will most likely have them by Christmas.
Surgery was quick and simple. Two of the feducials had definitely worked their way out of the skull so they had to come out. The other was doing fine, but they removed it anyway. She now has 3 shaved spots on her head to match the bald spot in the back of her head from radiation. She looks like a 3 year old that got a hold of the scissors...but that's why we made so many hats, headbands and bows!
Due to the surgery, they postponed the start of oral chemo and we will begin that on Friday. We have appointments this week to meet with the county to do evaluations and make a plan for therapies moving forward as well. She has been doing really well at home so far. She has all these toys that she hasn't seen since Christmas and boy is she having a ball! We moved all of her stuff upstairs to the big room so she can play on carpet until she has better stability. She still loves climbing, so on and off the couch, her chairs, the stairs -- anything she can pull herself up on. We really need some of those jungle gym wedges so she can climb!
This week we are attempting to ease back into our life, slightly adjusted. I spent all day yesterday packing up outgrown things, rearranging for new things, and trying to make it all efficient. It is amazing how much room her line change supplies and meds take up!! Jeremy worked on the yard and cars of course. And we checked out a new church down in Olathe. We really liked it and they had a great children's area set up - lots of security and like 10 different age group rooms. We are going to put her in with the 6-12 month olds as they are crawlers and much more her speed at this point. They had coffee, which is all it really takes to get Jeremy there so we are set!
We are really looking forward to Saturday and to seeing everyone that can make it. Avery turned 18 months old last Wednesday and so we are celebrating her birthday as best we can. She was cheated out of that 1st birthday party! It's an open house, so come and go as you please and stop over whenever you get the chance! Avery has turned into quite the snuggler in the last few months...so if you crave some lovin' - I suggest stopping by!
Only 2 things are missing from the Christiansen House...Jersey Anne and Maple Jo! They should be here on Friday and boy let me tell you - we can't wait! Cy really misses his girlfriend/best friend. They've been spoiled rotten while we were away so coming home won't be nearly as fun as they think it will be, but we'll try to spoil them just a bit too. It has been great to not have to worry about them the last 7 months and to know they were being taken care of. So a great big "Thank You" goes out to Aunt Lori & Uncle Bob, Rob & Amy, Nana & GJ, and Dan for taking on our other kids!
Jeremy left for work this morning kissing both of his girls goodbye and knowing that a 15 minute drive was the only thing separating us. I think his week will be a great one, no matter how awful the heat is.
We'll continue to keep everyone updated as we go through Chemo these next 6 months. She has such a long road still ahead of her, but we are so grateful that we'll be able to do the next part from the comforts of home. So for now, scans and spinal fluid are clean. Counts are hovering in the 1200 range and oral chemo is around the corner. But the best thing is that my little girl - is home.
Love,
Jenn
Wednesday, July 21, 2010
Change of plans
We arrived, unscathed from our road trip from Florida. It was pretty unevenful and Avery did great. We had to unpack the car...ok well Jeremy had to unpack the meticulously packed car at the hotel in Mobile as they had had multiple break ins in the past few days. Needless to say he was not happy. Then we arrived at St Jude and the Grizzly house was full so they put us back at the Target House. More room, but no maid service.
Avery had a full day of appointments today at St Jude. It was great to be back in a place that is so well put together, although it was a very long day. ANC came back at 1200 - so lower than when we left FL but not dramatically. She has grown an inch and is now 31.1 inches long and weighs 21 lbs. Avery met with the dentist and they scraped her teeth -- yes she had plaque buildup on those 2 bottom ones already. Who knew you were supposed to brush a baby's teeth 3 times a day?! He wants to continue following her as Chemo can affect children's teeth so we'll be back to see him in October. Her underbite and grinding of teeth are all due to stress and not fixable at this point...cosmetics later on I suppose.
Her MRI and lumbar puncture were this afternoon so we didn't get any results before the end of the day. We did however meet with our Nurse Practitioner regarding Avery's feducials and she consulted with Dr Boop (neurosergeon). They decided to take out Avery's feducials as they believe one of them is working its way loose. Normally they would not remove them, but because Avery is still so young, her skull is still soft and not retaining the screws as well as we'd like. Good news is that she doesn't need them anymore so good riddance! Unfortunately, this also means we have to have surgery on Friday to remove them. The plan is to be admitted at 7am on Friday at LeBonheur and she will have the screws removed and her hearing test done at the same time. Anesthesiology will most likely keep us over night so our plan to leave on Friday will be pushed back to Saturday.
Tomorrow we will meet with PT and Speech, as well at the eye dr before getting our results from the MRI and LP. Our Dr is on leave again -- go figure -- so we'll meet with one of the other Dr's to discuss the results. We end the day with a 4 hr behavioral test so we can see if Avery is still behind in development and if so, where. This test is done every year so they can measure the effects of the radiation and chemo. We had it done this spring as well to attempt to get a baseline for her. This is more like playtime for her, so it won't be as bad for her to sit through. Friday will be a long day as they require us to hang out in a hospital room to make sure the anesthesia doesn't have any strange effects on her. Seriously? She's been knocked out more times in the last 8 weeks than we could ever fathom -- I think we got this down. But whatever....those Anesthesiologists are in charge up there...we don't mess with them. To top it off, they have to have a fresh blood draw prior to surgery so she will get poked. Not really too worried about this as she is a trooper with shots but hates to be confined. In KC when this whole project began, they started a line in the ER and let me tell you -- she was NOT HAPPY about being wrapped in a sheet to keep her from moving. We are going to try to do it without that as I think that was her problem more than the poking!
Anyway, I better get some work done...It was strange being back at work last week, but it felt good to have some control back, well to at least think I had some control back in my life. We are really anxious to get done and get home....and to see everyone!
Jenn
Avery had a full day of appointments today at St Jude. It was great to be back in a place that is so well put together, although it was a very long day. ANC came back at 1200 - so lower than when we left FL but not dramatically. She has grown an inch and is now 31.1 inches long and weighs 21 lbs. Avery met with the dentist and they scraped her teeth -- yes she had plaque buildup on those 2 bottom ones already. Who knew you were supposed to brush a baby's teeth 3 times a day?! He wants to continue following her as Chemo can affect children's teeth so we'll be back to see him in October. Her underbite and grinding of teeth are all due to stress and not fixable at this point...cosmetics later on I suppose.
Her MRI and lumbar puncture were this afternoon so we didn't get any results before the end of the day. We did however meet with our Nurse Practitioner regarding Avery's feducials and she consulted with Dr Boop (neurosergeon). They decided to take out Avery's feducials as they believe one of them is working its way loose. Normally they would not remove them, but because Avery is still so young, her skull is still soft and not retaining the screws as well as we'd like. Good news is that she doesn't need them anymore so good riddance! Unfortunately, this also means we have to have surgery on Friday to remove them. The plan is to be admitted at 7am on Friday at LeBonheur and she will have the screws removed and her hearing test done at the same time. Anesthesiology will most likely keep us over night so our plan to leave on Friday will be pushed back to Saturday.
Tomorrow we will meet with PT and Speech, as well at the eye dr before getting our results from the MRI and LP. Our Dr is on leave again -- go figure -- so we'll meet with one of the other Dr's to discuss the results. We end the day with a 4 hr behavioral test so we can see if Avery is still behind in development and if so, where. This test is done every year so they can measure the effects of the radiation and chemo. We had it done this spring as well to attempt to get a baseline for her. This is more like playtime for her, so it won't be as bad for her to sit through. Friday will be a long day as they require us to hang out in a hospital room to make sure the anesthesia doesn't have any strange effects on her. Seriously? She's been knocked out more times in the last 8 weeks than we could ever fathom -- I think we got this down. But whatever....those Anesthesiologists are in charge up there...we don't mess with them. To top it off, they have to have a fresh blood draw prior to surgery so she will get poked. Not really too worried about this as she is a trooper with shots but hates to be confined. In KC when this whole project began, they started a line in the ER and let me tell you -- she was NOT HAPPY about being wrapped in a sheet to keep her from moving. We are going to try to do it without that as I think that was her problem more than the poking!
Anyway, I better get some work done...It was strange being back at work last week, but it felt good to have some control back, well to at least think I had some control back in my life. We are really anxious to get done and get home....and to see everyone!
Jenn
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