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Monday, November 30, 2009

Picture of Pale Ella

Here is that photo that I was talking about in yesterday's post. Look how pale Ella was the day before I finally figured out that I needed to get her blood tested. Such a little trooper!! I would show you the other group pics too but they are for Christmas gifts for certain eyes that read my blog :)

Sunday, November 29, 2009

Ella is 20 Months Old Today

We love this little girl so much!! I can't believe that another month has already passed by. Ella still seems to be feeling good. I think both daddy and I are on high alert worrying about every little thing she does. "Is she still pink?", "How has her energy been today?", "Is she moving around and getting into everything?" For now, the answers to all of these questions are "yes!" We had some pictures done of my kids and their cousin two days before she went into the hospital and I just picked them up last night. I was SHOCKED at how pale she was in the photos. I can't even tell you how guilty it makes me feel that it took me so long to figure out what was going on. I will try to scan one of the photos so you can see just how bad she looked....however, she was totally smiling in all of the pictures. What a trooper!!!
Tomorrow morning I will take her to our local lab and get her blood drawn again for the tenth time this week. Then on Tuesday, we will head to CHOC to get her bone marrow biopsy done. They want her blood counts done the day before so they have them the day of the procedure to make sure her hemoglobin and platelet counts are high enough to do the procedure. I pray they will be so that we can get some answers. We are definitely in "prepare for the worst and hope for the best" mode. Joe and I have started talking over the details of how we will work things out IF she is showing signs of leukemia and we have to start having long hospital stays. The hardest part to figure out is what to do with Abbey and Emma. Thankfully my mom and sister are in town so that should help. I know it seems as if we are being premature in our planning but we just don't want to get hit with everything at once. And the truth is that most of the doctors do feel that she will probably turn to leukemia eventually.
On a positive note, I think she is saying her first official word...."bye, bye". She has been saying something like Ma Ma and Da Da but it doesn't seem to necessarily be directed towards us all the time. But bye bye is always accompanied with a wave of the hand so on this one I am sure. Maybe someday I will be able to catch it on video.

Friday, November 27, 2009

She's Home!!!

Ella got to come home today. Her hemoglobin count was 10.6 so they let her go. We will go back on Tuesday to the outpatient clinic to do the bone marrow biopsy but at least for now we are home!! It was so nice to get the IV and all of the other monitors taken off and some regular clothes put on. As you can tell from the pictures below, she has definitely gotten back to her old self!! Thanks again everyone for your prayers and I will let you know more as we find things out. It will be time to play the waiting game again as we patiently wait for the results to come in.

Trying on the bunny mask from Grammy Auntie

Playing with the workbench

Making a mess where she shouldn't be (she is really
back to normal)

The mess left behind

Thursday, November 26, 2009

Doing Better

I am so sorry that it has taken me so long to post an update on Ella. The computers at the hospital are so blocked and even though they gave me codes to get on facebook and my blog, when I would try to post something, it would block me out again. It was just too much work to get any messages out. Just know that I tried. ANYWAY...Ella is doing much better. She is still in the hospital at this point. The morning of the day we took her in to ER her Hb was 3.5 and by that night when they drew blood again, it was down to a 3.0. Thankfully they were expecting us at the ER and we got taken right back to a room. But we had to sit in that room for a couple of hours while they got her IV in, took some blood to make sure of her blood type, wait for the blood to come down etc. etc. By the time we got to a room it was 3am. Ella finally got to sleep in a crib for about 3 1/2 hours until of course they come in to start messing with her. It is true when they say you get no sleep in the hospital!!! Over the last 2 days, they have given her 5 units of blood which brought her numbers up to 8.6 as of this morning. What a difference we saw in our little girl once she got some iron back. She was so perky yesterday that I couldn't get her to nap even though she had only slept a few hours the night before. She would just smile and make faces at every person who walked in the door......of course until they tried to touch her. Then the screaming would start. Then the smiles and faces would come back again after they finished. They have run every blood test to check for viruses but of course those take a few days to get back. Today was nice because they actually disconnected her IV and monitor for a while and let her play on the play mat and take and little cruise around the hospital. She wouldn't keep her mask on and kept trying to climb out of the wagon so I didn't keep her out long. I just went down to the cafeteria and got a salad and soda and came back. Still it was sooo nice to get out of that room. She of course has perfected the parade wave by waving at every person that gave her attention on our adventure. Right after I left her with daddy, the nurse checked her IV and apparently it wasn't working right so they had to take it out and re-do it. Thank God it went smoothly and I guess they put it in her foot this time.

The doctors still haven't figured out what the cause is. Each doctor seems have their own suspicions but haven't been able to confirm it. The possibility still exists that it could be leukemia cells starting to take over in her bone marrow but that can only be confirmed with a bone marrow biopsy which can't be done until her hemoglobin numbers are at least 9.0 and now with the holiday and weekend, the results wouldn't get back right away anyway. One doctor still thinks it is some condition that I can't remember the name of called something like hemapenia but he can't confirm that either. SOOOOO as of tonight when I finally left daddy to stay the night and I came home for a nice turkey dinner and a good night's sleep in my own bed, they are giving her 2 more units of blood tonight and then will do another blood draw in the morning and as long as her numbers are still up, she will get to come home sometime tomorrow and then we will go back to the outpatient clinic next week to do the bone marrow biopsy. Thank you everyone for your thoughts and prayers...they are SOOO appreciated. Here are a few pictures of Ella's metamorphasis over the last few days.
Waiting for mommy to get stuff together to head to the hospital
In the ER
Falling asleep on daddy's shoulder in the ER
Ella's ET toe....she was fascinated with it

The next morning after 2 units of blood

Starting to really get some energy back

Gotta have your Jaxson blankie when you are in the hospital

Just after a sponge bath

Silly girl!

Play time!!

Going for a ride

Tuesday, November 24, 2009

Quick Update

Okay...I heard back from the doctor. The good news is that there were no leukemia blasts in her blood and her platelets are actually up to 180,000. The really bad news is that her hemoglobin is at 3.5 (11 is minimum for normal). So he wants us to go in to Children's Hospital ER and have her admitted where they will do a RBC transfusion most likely and then observe her for a day or two. Her thinks some kind of virus has caused her body to basically eat her hemoglobin. Please keep her in your prayers that it will be easily resolved.

Monday, November 23, 2009

I Am Worried

Ella seems a bit unlike herself lately. She has been waking up between 5 and 5:30 every morning, crying which isn't like her at all. I pick her up and soothe her and she will fall back to sleep.....for a few minutes and then cries out again. I end up having to put her in bed with me and then she will sleep until 8am. Then during the day, she isn't her usual independent, busy self. She is just sort of hanging around on the floor and wants to be held ALOT!! The thing is, that she has no signs of being sick. No fever, no runny nose, no cough....Nothing!! So of course, my mind immediately goes to her blood. Her last blood draw was okay but her Hemoglobin was somewhat low which hasn't been the norm like the low platelets have been. However, the doctor never said anything about it so I figured they weren't too worried. Then my mom mentioned that her gums had no color so I started thinking about the hemoglobin again. According to Zoey's mom Heather, low hemoglobin would account for the lack of energy, paleness and just plain ole "being off". So with a little nudging from Heather, I am going to do what has been in the back of my mind to do......get her blood drawn tomorrow. I can't pretend to ignore it and hope it will go away, it just needs to be done. So, please pray that it is just low hemoglobin and that there won't be any blasts in her blood. I know that it is a definite possibility because the hemoglobin is made in the bone marrow but hopefully it is just another one of Ella's blood anomalies.

Also, has anyone gone through the process of donating to Reece's Rainbow through the PayPal system? If you want to donate to a specific child, will it somewhere along the process in PayPal have a place for you to specify who you want the money to go to? Thanks!!

Thursday, November 19, 2009

Ella And Her Daddy

Ella and her daddy have such a sweet bond. She literally melts his heart! I won't lie, he had a hard time when we first got her prenatal diagnosis and really wasn't sure what to expect when she was born. But sure enough, it didn't take long after her birth for him to realize that she was so easy to love and he bacame as attached to her as he is to his other two daughters. Obviously, Ella has been through a lot more that Abbey and Emma. She spent 8 days in the NICU, has had to have blood drawn regularly, had three bone marrow biopsies as well as many other follow up check-ups. He CAN NOT stand to hear her cry!! Unfortunately he works a lot of hours which include nights and weekends so he misses out on a lot of the fun things we do but I think his favorite thing to do is to just sit on the couch with her in his arms and watch TV. Sometimes she will just sit with him for an hour and he just loves it!! So here are a bunch of pictures of Ella with her daddy during the first 19 months of her life.....so sweet!!!

Moments after Ella's birth - March 2008
Moments later! - March 2008
First time feeding her - March 2008

Finally at home, sleeping on the couch - April 2008

Ella's first swim - June 2008

Hanging with daddy at a school play - June 2008

Enjoying the jacuzzi - July 2008

Watching big sissy's soccer game - October 2008

Knott's Berry Farm - December 2008

Hanging on daddy's shoulders - December 2008

Posing for Christmas photo -December 2008

Watching the Shamu show - March 2009

Eating a cookie (Not!!!) - March 2009

More sleeping on the couch - March 2009

After first bone marrow biopsy - April 2009

Their favorite pastime - May 2009

On the boat in Lake Havasu, AZ - June 2009

Another ride on daddy's shoulders - June 2009

After second bone marrow biopsy - July 2009

Hanging on a park bench - July 2009

More favorite pastime - October 2009

Having a pony ride - October 09

Monday, November 16, 2009

One Big Huge Update

Since it has been soooo long since I have posted anything, I figured I would just catch up on everything in case I don't post again for a while. We did another blood test a couple of weeks ago and everything is still good. Her platelets were still low (58,000) but that is up from 23,000!!! And no blasts showed up in her blood which of course is excellent. We went in to the ENT because she never passed her newborn hearing test and because she was so little, they couldn't really see in her ears anyway so they just wanted us to wait until she got bigger. I knew at 9 months that she was suddenly hearing quite well so I didn't push seeing them again until she was 18 months. The doctor looked in her ears and said there was no fluid in her ears and her ear drums looked shiny which I guess is how they want it to look. She will refer us for a hearing test and she said that as long as she can hear to at least 20 decibels (I think), then that is all she needs to pick up speech. So thankfully, no tubes are needed!!
Then the next day, we did a follow up with her cardiologist whom she hadn't seen since she was 5 months old. He is following her to see if her PFO and VSD (small holes in her heart) have closed. Due to the many blood draws that Ella has had in her life, she has officially hit the point where she doesn't want any doctors touching her. She will sit and flirt with them until they touch her and then she starts whining like there is no tomorrow. Of course this made it hard for the cardiologist to hear but he said he didn't hear any murmurs. I asked him if we would do an echocardiogram to be certain if the holes had closed and he said "Do you think she will be less afraid next year?" Like I know how she will be a year from now. I told him that I am not afraid to hold her down so let's just go for it this year. If the holes have closed, then we will be done with seeing the cardiologist so I figure, why wait!!
And lastly, we have FINALLY gotten Ella authorized to get some OT to try to get her to eat solid foods. I ended up just asking my pediatrician if we can do it through our private insurance instead of waiting on the state to provide it. She would be 10 and still drinking formula if I wait on the State of CA!! So we have kept our pediatrician pretty busy getting us referrals this past month. Ella is weighing in at 23 lbs 3 oz this month....so I guess the formula is sustaining her just fine for now. Below is a bunch of pictures that probably should each be their own post but I may never catch up if I don't just post them all now.

Ella - 19 months

One day I decided to do some real pigtails and they actually kind of worked. The long piece of hair on the top of her head that usually makes up her antenna type ponytail is now almost long enough to reach to her pig tails. I just put her on her little car and she sits still pretty well.

I think this is my new favorite picture

Pigtails......post nap!!

Below you will see lots of pictures of Ella's new favorite activity......standing. She is finally pulling up to everything she can reach and then just standing there. She does it with such ease now and it seems like just yesterday she couldn't do it at all. Just another example of the little milestones that we usually take for granted. I just love that now I can stare at her cute butt!!

Another new thing that Ella is doing......getting in the kitchen cupboards. So on Daddy's last day off......the childproof latches went on. I can finally relax again. We only had 2 broken crystal bowls!! Little stinker!!

Needless to say, Daddy has been pretty busy childproofing lately. He finally got the gate installed for the stairs but not before Ella quietly made it to the top TWICE without any of us knowing!! Of course when I finally decided to do a video of her climbing, she takes her sweet time doing it. As usual, sorry for the grainy quality of the video!!