Wednesday, June 30, 2010
Monday, June 28, 2010
Sorry this video is so long but when I post something from One true media it always makes it a new post so I wanted to add these two videos together. I said many times that Ella is always the center of the show and here is just another example. We were at my sister's who had some friends over and we all were surrounding her and watching her entertain us. She would stand up on the bed, which amazed me as it is so not solid, and then clap because she was so proud of herself and wait for us to cheer too. We tried to get some good video of her getting her groove on but she only half cooperated.
We have been home since Saturday night and will go back in on Wednesday for the looooong stay. So needless to say, we are enjoying every minute at home!!
Friday, June 25, 2010
Giving the doll a kiss...she is like a new family member.
Notice that Ella is holding the heparin tube in her hand..
I think she really thinks she is the Dr.
Awww....my new friend!!
Mommy and Ella's self portrait
In awe of the "Music Man"
Catching up on some reading
Thursday, June 24, 2010
Ella is doing really well so far. I was worried that once we walked into her room and she saw the crib, that she would be instantly upset and remember why she was here. But I think she almost ooohhed and aaahhed when we walked in. She was perfectly happy with each person that came by to say hi and was full of smiles. They started her chemotherapy last night at 9pm. This round it goes for 3 hours every 12 hours for two days. So basically she will be getting 4 infusions and then we will go home for a few days and then come back next Wed. or Thurs. Because this is a higher dose, they also have had to give her some eye drops every 6 hours and I thought...."this ought to be interesting!" But she actually has done fine with them....other than the brief crying while we hold her down. And so far there hasn't been any nausea, thank goodness. I was really worried about her sleeping last night because they had to do multiple blood draws, check vitals, change diapers etc. etc. and so I thought she would be up all night. But thankfully she slept through EVERYTHING! But of course I heard it all!!!
I tell you one thing though. The good thing about being in the hospital is that we get all of her therapy services so easily. No regional center to fight with. Before 2pm today, she had already been seen by PT, OT and Speech/feeding therapy. Wow!! It is nice because it gives her something to do each day. Yesterday we got a visit from the music therapy guy and boy was that a hit. She LOVED every second of her session with him. I have a great video that I will post when I get home. Another cool thing is that our nursing assistant has a 4 year old son with Ds so I have been getting some good hints from her.
UPDATE::::: During the time I have been typing this, we have had a little spit-up/throw up. She is still smiling so don't know if it is a nauseous throw up or not.
Tuesday, June 22, 2010
So, I am just waiting to get a call from the hospital telling us if we will be admitted today or tomorrow and then we will start round 2 the next day. I am ready to move on with this treatment but so dreading going back in the hospital. This round is a little different. They break up the chemo infusion by giving it to her for 2 days and then having a break and then giving it to her again on days 8 and 9. Supposedly we will get to go home in between for 4 or 5 days so this first hospital stay should only be about 3 days. That I can live with....but when we go back, it will be for the long haul again, probably at least 3 weeks.
Here is a picture of the feisty one!! And yes, she looks like she is making an obscene gesture!!
Sunday, June 20, 2010
Yes, we are still home. Ella's blood counts still weren't high enough as of our visit to the outpatient clinic last Wednesday. There is a certain number they look at called the ANC (absolute neutrophil count) which has to do with the immune system. That number is suppose to be 1000 for us to start the next round of chemo. She has gone from 534 when we left the hospital to 764 four days later and then down to 595 another four days later and then finally this past Wednesday when it was 525. So basically she is just bouncing around all over the place. According to Heather (Zoey's mom) this isn't unusual for our kiddos. And I really can't complain because it has given us an extra week at home already. I am suppose to get her blood drawn again tomorrow (monday) and if her numbers are high enough, then we will go back in the hospital either tuesday or wednesday. The good thing is that all of her other counts such as platelets and hemoglobin have looked great so thankfully we haven't needed any transfusions or anything.
Today, I put my older girls on a plane to Dallas, TX by themselves. We have tried to plan a lot of things over the summer to keep them occupied so we aren't having to stress about who has them each day. Since we used to live in TX (and love visiting whenever we can) I thought it would be fun for the girls to spend some time there visiting old friends. I was doing fine with them boarding the plane but it was watching the plane take off and rise up into the air that actually got to me. It was the strangest thing to know that my kids were up in the air without me. Thankfully they arrived safely into the arms of one of my oldest childhood friends, Michelle. Another mom of the year moment.....after borrowing my sisters camera so I could capture this first solo flight, the camera stayed conveniently in the bottom of my purse the whole time. Bummer!!
As for Ella.....the child is a human tornado!!! Seriously. She was at my mom's house last night while I took the girl's out to dinner and did a little last minute shopping. When we got back to my mom's, it truly looked like a tornado had struck. Then, today, while I took Abbey and Emma to the airport, she stayed with my sister.....same story, different address!! So, you can imagine what my house looks like daily. But, alas, I tell myself that none of this matters...be thankful that she is SOOOO full of energy.
You may be wondering why I have not mentioned anything about Father's Day today. Well, we kind of celebrated on Friday because daddy had to work today and the girls were leaving. So today was just another day for us. But Happy Father's Day to all the great Daddy's out there.
Here are a few (crummy) pictures of Dr. Ella. She got to bring her stethescope home from the hospital and the child seriously cruises around the house all day with it around her neck. It drags on the floor but she doesn't seem to mind.
Sunday, June 13, 2010
This past Thursday, we had invited Jax and his family to come to our house for a visit. They were doing Disneyland for the week but since Ella happened to be home from the hospital right now, we weren't able to hook up with them there. So they headed out around 5pm to come and visit for dinner. The problem......we live in Southern California and that is rush hour time. With no traffic, it takes an hour to get to our house!! So you can only imagine how long it took them! Traffic was unusually heavy so we finally decided that we would go and meet them to save them some time. We chose a place that wouldn't be busy, especially since it was now about 7:30 pm, so that Ella wouldn't be exposed to a crowd of people. It was just a little burger joint but we pretty much had the place to ourselves for a couple hours.
Friday, June 11, 2010
Before I move on to the many pictures of the day, I wanted to let you know that the bone marrow biopsy showed that Ella's leukemia is in remission!! Yay!!! We still have to do 5 more rounds of chemo,however, because they want to be sure and get every last bad cell in her body and sometimes they hide in obscure places. We won't be starting round 2 on Monday like we originally thought as her blood counts haven't reached the level they want yet. So, it's nice because we get a few more days at home but just means it will be that much longer until we finish treatment. I guess God knew I needed a few more days to try and get my house caught up as well as a few days to sleep in now that school is over!!
Now for the onslaught of pictures, most of which need no explanation!
Monday, June 7, 2010
Isn't my little sleeping beauty just precious??? This is what you look like when you have been given a little extra "feel good" juice. I am probably a terrible mom for saying this, but I can't help but laugh every time they sedate her because she giggles and smiles so cute as she is starting to get loopy. I can't tell you what a different experience this bone marrow aspiration was from all of the ones prior to the broviac line. In the past, we have spent at least an hour trying to get an IV in her arm BEFORE even getting to the bone marrow. This time, we just walked in, undid Ella's onesie and she sat there while the nurse injected drugs into her line. I HATE that we have to do this but anything to make it easier is simply wonderful. They had to give her a little extra sedation because the Dr. ended up having to do a second needle stick to access a better spot in the bone marrow and this took a little longer. All total, she was probably only out for about 20 minutes. It definitely took her a little longer to wake up this time. And then for the first 30 minutes or so, she is very wobbly. She would try to sit up and kind of fall over in the bed. Award winning mom that I am, I allowed her to hit her head on the side rail one time as she tipped over, resulting in a nice bruise next to her eye! It will be a few days before we get the results on the bone marrow but the good news is that her peripheral blood looks real good. Her immunities are building back up nicely and she continues to make platelets and hemoglobin on her own which means that the bone marrow is working as it should. Now we just wait to make sure that they don't see any more leukemia cells in that bone marrow. Please pray hard the next few days for REMISSION!!! Thanks.
Also, here is a video that I forgot to put on last night's post. We call this her strength pose. Usually she makes a grunting sound when she does it but of course wasn't doing it for the video.
Sunday, June 6, 2010
Walking the babies
Oh, and a little bit of standing!!
Opening gifts from special friends
Look....it's my friend Chloe
And saying "Elmo", who by the way is now my favorite!!!
What we haven't been doing is going to bed early...or even a little late!! Nope, the earliest time Ella's eyes have closed yet is 11:30pm!!! I don't know what the deal is but this child is not tired at night. I even tried not doing naps the last few days so she would be tired...but no luck. She took a 2 1/2 hour nap in her crib today so we will see if tonight is any better. But the good news is that she doesn't wake up until 9:30am. I am trying really hard not to complain here but boy had I so quickly forgotten what a mess this little angel can make!! I have not been able to get a grip on the house since she came home. She has found everything to get into that she possibly can. I think we had gotten a little slack in some of our childproofing while she was gone and it has caught up to us. SHE HAS BEEN ONE LITTLE STINKER!!! But I will take it any day if it means we are ALL home!!
She is also freaking out if I leave her!! If daddy or my mom come in the room, she panics and finds me as quickly as possible. I can't figure it out other than the fact that they are the two people who would relieve me the most at the hospital and she is afraid that I will leave her if either of them come in the room. Poor daddy, he keeps trying to win her over. He usually will at some point each day but then the next day it's back to her strange reaction. I feel badly for her but at the same time I feel like I can't go anywhere. It is hard because she can't leave the house and go to the store with me so I have to go without her. I know she gets over me leaving but I still feel bad torturing her like that. I think she is just trying to get readjusted to being home. The sad thing is that she will probably just get adjusted and then we will have to go back in to the hospital. Boy am I dreading that day!!!! But I am not thinking about it....hopefully it is still a week away. For now, Ella has been incredibly happy and feeling great. I have to flush her broviac line once a day with heparin so that it won't clot. In the hospital she would wiggle and squirm and whine whenever the nurses did it but I have found that what makes her the most nervous is when I lay her down on her back to do it. I think she associates this with people messing with her. So the last two days I have just let her sit up on the couch and we just sit there and do it and she doesn't mind at all. She even tries to help by pretending to wipe the line down with alcohol.
Tomorrow we go back to the outpatient clinic to have the bone marrow biopsy done. I am hoping that this will be a fairly easy procedure now that she has her line in and we won't have to mess with putting an IV in. Then we just wait a few days for results and PRAY, PRAY, PRAY that she has already gone into remission and they see no leukemia cells!!! (NO, this doesn't mean that we would get to stop treatment).
Thursday, June 3, 2010
We have to go back to the outpatient clinic on Monday for a bone marrow biopsy and they will check her blood then. I asked if we would be able to stay home through the week as it is the last week of school and Abbey will have her promotion to middle school etc. They said we should be able to wait to start up again with the next round (assuming she reaches the next magic number) the following Monday (June 14) so that will give us a total of 10 days at home!!! Heaven!!! So what if she can't leave the house....we will so enjoy just being home.
Of course the battery on my camera is dying so I was having trouble getting pictures but these are the few that I have from her arrival home. It is funny because before leukemia, I probably wouldn't have even found these photos worthy of making it to the blog as they seem so "regular". But they sure seem special to me now!!!