Ella is 18 Months Old!!!

I can't believe how fast this past month has gone! Seems like I just posted about her being 17 months old. As you can see from my previous posts, she is really starting to blossom in her gross motor skills. Climbing up the stairs and working on standing are great practice for free standing and eventually walking. I also finally got some decent pictures of her teeth. Okay, maybe they aren't flattering pictures but at least you can see those cute teeth. Also, for those that have been following my blog you may have noticed that every month since Ella was born, I have taken a picture of her sitting in the same spot on this couch. This has started to become a very difficult task because she simply refuses to sit still. It has become a game to her when I plop her in the spot and she tries to move as quickly as possible before I snap the picture....giggling as she goes. See examples below :)

Look at those teeth!!!

Showing her teeth naturally :)

Look At That Cute Butt!!

Ella was practicing standing a little bit tonight. She was doing a pretty good job holding on to the window sill while looking out the window but if you look at her right foot, you can see that it definitely isn't very stable. But it will only get stronger with practice, right?? She thinks it is just as fun to fall down on her bum though.

Look What Ella Did!!!

She climbed the stairs!! Yes, this is a great milestone...but not one I am excited about!! Her teacher has been working with her on it but she was really assisting her so I haven't started worrying about putting a gate up yet. So, today, not 20 minutes after her teacher left, we hear her kind of cry out and Emma finds her sitting 5 steps up on the first landing!!! OMG!!! So of course we bring her back down and the girls try to coax her back up so we can see her actually do it and sure enough off she went. I think the easy days are over with!!!

Results.........FINALLY!!!

After just posting below, the doctor finally called me. Of course it is always a little worrisome when the actual doctor calls but then I am always happy to be able to question him directly. Anyway.....for now, Ella's bone marrow remains the same. For those of you that understand the lingo....her bone marrow shows 2% blasts in it. I guess anything under 5% is fine. Everyone has some blasts at any given time. And apparently she has had 2% blasts in previous bone marrow biopsies as well. So the good news is that nothing has gotten worse!! The doctor is still waiting on the chromosome results which I guess will show if there are anymore of the bad chromosomes developing. This is how I understand this....I could be way wrong...but, everything starts with the chromosomes. In Ella's first bone marrow biopsy, they saw some bad cells on chromosome 8 which is an indicator for cancer (I think). In her second biopsy, those bad chromosome 8 cells remained unchanged. So he wants to see if those have changed this time. Leukemia will start with a change in the chromosome cells which will in turn start affecting her bone marrow which in turn affects her blood. So he feels that something is going on that is making her platelets so low but its not showing itself yet. He still thinks that we will most likely have to do chemo sometime in the future...we just don't know when that will be. I just keep hoping that it is Ella's wacky blood. Kids with Down syndrome just do things differently. Time will tell but for now we can breath easier for another month. We will recheck again in a month.

Thanks EVERYONE for praying for Ella and for sending me messages and for just thinking of us all so much while we are on our roller coaster ride!!! It would be a lot harder without people who care.

No Results Yet!!!

I STILL HAVEN'T HEARD ANYTHING!!! And I can't decide if that is good or bad. Does it mean that the results aren't urgent so they just haven't called yet? Or does it mean that the doctor wants to consult with others before calling me? I don't know. I just sent him another email so we will see if I hear back this time. I am trying my best to be patient!!

Anyway, Ella has become quite the stinker!! For anyone who knows me well, you would know that I am a picture freak and that my photos are VERY important to me. Well, I have all my photos from before the digital days filed in order by date and in photo boxes. For the last few years, I have had them stored on a book shelf on the bottom couple of shelves. I knew that I would eventually have to move them but haven't decided where else I can put them. Recently, Ella has pulled a box or two off of the shelf but I caught her before she opened them. I even put rubber bands around them so she couldn't open them. The other day, I heard her playing there but thought she was just looking at the little albums that sit on the bottom shelf and felt secure that she couldn't possibly have gotten into one of the photo boxes....Ha, Ha, Ha!!! When I walked about the corner, this is what I found!!!

I don't know if you can tell or not, but she totally has a little smirk on her face. She dumped the whole box, pictures and negatives all mixed up!! The more I said No! No! The more she laughed. What a stinker!! Then, the next day, I was throwing away junk mail etc in a paper sack and boy did she have fun emptying that out as well.

Here is Ella HOLDING a carrot. That's a step towards eating

right? She even touched it to her mouth a few times just to tease me!!

Does anyone remember Bob's Big Boy Restaurant? We just got a new one here in Temecula and the girls wanted to play with Bob!!

Emma getting her student of the week award from her teacher.

Way to go Emma!!

OH...and one last thing you won't believe. Last night we were out to dinner at Pat and Oscars and right in front of us in line was a little boy with Ds. I asked his mom if he had Ds and she said yes and then I said that Ella does too. He is 15 months old and lives only about 3 miles from us!!! Can you believe it? There are some little ones with Down syndrome around here afterall. I am looking forward to a playdate. He is younger than Ella but was actually a couple pounds bigger!!!

Look What We Found..........

A FRIEND WHO LIVES IN THE SAME CITY!!!!! Most of you have heard me whine about not being able to find any little ones with Down syndrome in my area. I mean I have had to travel hundreds of miles for Ella to see her friends. Not anymore!! (Although I still want to see my far away friends too). Last spring at one of Emma's soccer games I was talking with another parent and she told me that she had a friend with a baby with Ds. I gave her my phone number and asked her to pass it on to her friend. Well, days, weeks and even months passed and I never heard from her. So this past Sunday, out of the blue, she called me!!! Turns out she only lives 2 miles from me!!! How exciting is that. So yesterday, Hannah and her mom Cheryl came over for a visit. Isn't Hannah adorable!!! She is almost 9 months old. Her mom and I hit it off great and Ella and Hannah did pretty good too. Of course, Hannah just sat there all sweet and innocent with a constant smile and Ella circled her like prey. Once in a while Ella would reach out to "touch" her "gently". She might have only pushed her down once or twice. But I think she likes her. I know I do!!






I finally got a picture that shows Ella's new teeth. It's not a pretty picture but you can see them. She is also getting one on the bottom in the center.....yay!!


Still no results at the time of this post!!

No Results Yet....But What A Day!!!

First of all, I want to thank everyone for your prayers today, with a special shout out to Zoey and Chloe's moms who did a special post for Ella. We still need continued prayers as it will take a few days for the results to come in.

It sure was an eventful day though. We arrived there for our appointment at 10:30am and they did the usual weigh-in, temperature and blood pressure. Then the doctor comes and asks me if she had blood drawn yesterday of which I said, "No, no one asked us to". Then she said that with her platelets being so low last week they didn't want to take a chance on doing a procedure because low platelets mean a possibility of her blood not clotting. So they wanted us to do another blood draw before the procedure which would mean waiting a few hours for results or coming back the next day to do the bone marrow biopsy. Now keep in mind that she has to be fasting and its already after 11am and she hasn't eaten yet AND we live an hour away so coming back the next day wasn't a great option either. SO, they decided to just assume that her platelets were still low and give her a platelet transfusion before the biopsy. BUT first thing they have to do is get the IV in which is already a task with Ella. So they wrapped her up like a burrito (like we do with newborns) leaving only one arm out. After 30 minutes of constant SCREAMING and two attempts at inserting the IV, we have success. So they start the platelet transfusion through the IV and tell me that there is always a risk of an allergic reaction so we watch her for any signs of hives or labored breathing. She is fine so as soon as the transfusion is done, they sedate her for the procedure and I leave the room. A few minutes later I notice first one nurse and then another enter the room......hmmm that's odd. But then 30 seconds later, one of the nurses pops their head out and says "Don't worry, she is fine". A few minutes later they call me back in and say they are done. When I walk in, the NP is holding her and said that she ended up having a reaction to the platelets. I guess as they were doing the biopsy, the nurse happen to lift up her shirt and saw a few hives and then she coughed a little bit. So the doctor immediately called for some IV Benedryl. Well you know how sleepy you can get off just regular Benedryl and I guess the IV kind is even worse. Plus she had just been under conscious sedation. So basically, they hooked her up with some sugar water so she wouldn't get dehydrated or low blood sugar since she hadn't eaten yet and I sat and held her for the next 3 hours while she slept. See they wouldn't let me leave until she was awake, had a bottle and didn't have any hives. So FINALLY at 4pm, we were able to leave. She seemed kind of dazed on the drive home but I am happy to report that as I write this, she is busily crawling around the house making messes as usual.

So now we wait.......and again, your prayers will be appreciated.

Look What We Got In The Mail!!!

Yesterday we got a package in the mail from Kristin, Max's mom. She has been making all of these cute hair bows and sent a few to Ella. They are UNBELIEVABLY cute!!! I wanted to show all of them while I was thinking about it so obviously most of them don't match her outfit but just think how cute they will be when the right season gets here!!! Thanks so much Kristin!! Also, please say a few more prayers for Ella that her bone marrow biopsy goes well tomorrow.

9/11

Patriotic Day at school

Ella being Patriotic too!!

I will never forget where I was when the attack occurred. I was at work in the County Jail working in the Main Control room. Someone called and told us that something was going on and we watched from a TV that was in one of the holding cells across from us. We couldn't hear anything so had to rely on people telling us over the phone. At one point, I went upstairs to another guard station that had a TV in it and watched for a few minutes. Literally at the moment I started watching, the first tower fell.....I was in shock!!! I will never forget that day as long as I live!! Both of my older kids were born by this point so in both of their scrapbook albums, I did a page explaining exactly what occurred that day so that they would never forget either.

Bone Marrow and Platelets!!

I am bummed!!! Ella's platelets dropped again!! Today they were 23,000 (normal being a minimum of 140,000). Her's have been running low for quite some time but had started trending upward slightly last month. But now they have dropped again and the oncologist wants to do another bone marrow biopsy next week. He feels that these bad cells that they saw on the chromosome test from the last biopsy are starting to interfere with the bone marrow production which is where the platelets are made. The only way to really know what's going on is to do another bone marrow biopsy. I got the feeling from him that he thinks chemo could be in our near future but I am still trying to be hopeful. Although there is a part of me that feels that if its going to happen no matter what, let's just get it over with and make her completely healthy!! So once again, we would welcome your prayers for Ella to have an easy time with starting her IV and that they won't see any leukemia cells. The procedure will be done next Wed.

Ella pulling cousin Ethan's hair

Ella and cousin Ethan


Ella and biggest sister Abbey

Ella and big sister Emma

Ella relaxing with Abbey

Thankful Monday

This is how I found Ella last night when I checked on her right

before I went to bed. Of course I had to go back downstairs

and get my camera!!!

So yesterday, Stephanie a blog friend, did a post called Thankful Sunday and I liked it. Well I didn't quite get to it yesterday so I am going to do Thankful Monday instead.

• I am thankful for every time Ella's blood tests come back with no leukemia cells!

• I am thankful that when my 10 year old's friend called and told her to check out some video on You Tube, I overheard her tell her friend "I am not allowed to go on You Tube"!

• I am thankful that I have a wonderful, easy going husband who gave up his Labor Day weekend to work overtime so we could get some much needed extra money!

• I am thankful that our weather has finally cooled down and I can turn my air conditioner OFF for the first time in weeks!

• I am thankful that Baby Max is recovering so well from his heart surgery!

• I am thankful for all the plants my mom and sister had planted in my front yard while we were on vacation AND that I haven't killed that many of them.....yet!!

• I am thankful that even with all the political crap that is going on in the U.S., that I get to live here!

• I am thankful for the amazing friends I have made all because Ella was born with Down syndrome!!

Wordless Wednesday