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Friday, July 31, 2009

Ella is 16 Months Old!!!

This is a quote that I came across when I was reading about little Presley of http://gilesfamilyof5.blogspot.com/. It just struck me as so true. I think all of us remember how we felt when we first got the diagnosis, whether it was pre or post-natally. We were devastated and afraid of the unknown. But I bet if you ask every parent who has a child with Ds, they would agree with this quote.
'We often think that having a child with T21 is like gaining membership to a secret club, a club you never knew you wanted to be in or even existed, but once you are in, you are so thankful that you were chosen'.

Wednesday, July 29, 2009

NOT Wordless Wednesday....Now I Have Something to Share....Results!!!

Yesterday we went and did another blood draw on Ella so her doctor could see if her platelets are coming up. Today I got the call from his office ........that they are!!!! Yay!!! They are still low at 55,000 but they are in an upward trend (from 36,000) which is what he wanted to see before he would give us the okay to go on our road trip. WE GET TO GO ON OUR ROAD TRIP!!! So if you are in our path.....hope to see you soon!! The other good news is that the chromosomal results from the bone marrow showed "no change". This means that she still is at a higher risk (30%) of getting leukemia but it hasn't started progessing in that direction at this time. So, once again, we can take a deep breath and not worry about it for now.!! Thanks again for everyone's prayers and well wishes.

***Note...in the picture above, she actually isn't throwing a fit, I think she was just making her scrunchy face. But it looks like she is MAD!!!

Monday, July 27, 2009

99 Years Older

Yesterday afternoon, we drove down to San Diego to visit with my Great Aunt. She and my Grandmother were identical twins. My Grandma lived to be almost 93 years old and now my Great Aunt is about to turn 100 years old in just 3 months. As she was sitting with Ella on her lap, it occurred to me that they are 99 years apart in age!! Do you realize how much has changed in this world in 99 years? What a different life they each had at birth. Although my aunt's mental state isn't too good anymore, she just LOVES the children. She was so concerned about if the baby was warm enough and as you will be able to tell from the pics, we could hardly get her to take her eyes off of Ella long enough to look at the camera. It was like trying to get two kids to look at the same time.....hence the reason they aren't!!! I also had a Great Aunt and Great Uncle on my dad's side that lived to be 100 & 99 respectively, so I am hoping that this means a pretty good life expectancy on my part :)

Still no more information about Ella's bone marrow results. We will do another CBC tomorrow or Wednesday to see if her platelets have improved so we know if we get to travel or not. I will update as soon as I know. But for now, I just continue to get things ready as if we are hitting the road in 5 days!!!

Four Generations of Our Family

Friday, July 24, 2009

Some Partial Results

I emailed Ella's oncologist to see if he had any results back yet. I didn't figure the bone marrow would be in yet but I was hoping to at least find out how her platelets looked. Here is what he emailed me back...

"Her marrow looks good and does not show leukemia. I don't have chromosome results yet. Ella should have her blood counts checked next week and fax us the results. Have a good weekend!"

Okay, so great news about the bone marrow for now. I know the chromosome results are what gives more long term info so we still have to nervously wait on those. I wish he would have mentioned SOMETHING about the platelets though. I put a call in to his care coordinator to see if she can get that info for me.....I will update you more if I find anything else out.
The Many Faces of Ella

Wednesday, July 22, 2009

Bone Marrow Biopsy

First of all....let me thank all of you for your wonderful words and prayers and for thinking of Ella today. It makes everything so much easier when you have support!!! I know that is one of the reasons I have a blog and let people know what is going on is because I believe that the more prayers being lifted up for Ella...the better. I hope you will keep it going.

Today went very smoothly. I am happy to report that they got the IV in on the first try (last time it took 4 attempts). This made the whole experience so much easier. I can definitely say that it helps alot to ask for the best IV starter on the staff (thanks Kele for this advice) and also for having done this once before and knowing that they had the best luck getting it in her wrist. Once they put the IV in, they gave her the "relaxing drug" and then the "sleepy drug". She was totally giggling as she was going out. I have to admit that this made the whole experience a lot easier. We had to leave the room while they withdrew the bone marrow. Within a few minutes, the doctor came out and said we could go back in and see our sleepy girl. She was already coming to but was very "floppy". We had the big sisters with us and they were allowed to come in the room as well. I do like how kid friendly they make everything for the families. Abbey (my 10 year old) opted not to come in for the IV placement. I think she has a hard time seeing Ella upset. Emma (my 8 year old) is like me....likes to see the action. We were able to leave 30 minutes after the procedure and other than being a little weak still, Ella seemed fine. She fell asleep immediately in the car but we woke her when we got to our next destination a few minutes later so she could finally have her morning bottle (this was at noon). After that she was good as new!!!

Now we wait for the results. We wait to see if her platelets have come up at all. We wait to see if there are any leukemia cells (blasts) forming in her bone marrow and if not, hopefully an answer to why her platelets are low. The doctors know we have a road trip planned in 10 days so hopefully we will hear something before then..I am thinking in a week or so. Please keep her in your prayers!!

Just waking up, trying to push up

My photo girl...trying to smile at the camera

Looking to daddy for help

Mommy kept forgetting that she couldn't
hold her head up well and she would flop back.

In mommy's arms (photo by Emma)

With big sister Emma

You can't see it, but she is looking a
the little red light they have attached
to her big toe (I think it is for oxygen)

How quickly she recovers...here she is performing
a pretend drum solo

Monday, July 20, 2009

Quick Update

Well, it wasn't quite the news we were hoping for. Ella's platelets are REALLY low. They are 36,000 and should be at least 140,000. Last month they were 91,000 and they were hoping they would go up but instead, fell quite a bit. The good news is that there still aren't any blasts (leukemia cells) in her blood. So the doctor wants to do another bone marrow biopsy to see what's going on. I guess they can get alot more information from the marrow and will be able to see if there are any leukemia cells forming in the bone marrow that just haven't made it to the blood yet. There is something that is causing her to have such low platelet counts and we need to get to the bottom of it. So Wed. morning we make the hour drive back to CHOC for the biopsy. The part I dread the most about this is getting her IV in. They have to sedate her for this test and need the IV to do this. Last time, it took us an hour to get an IV line in her. Please continue to keep Ella in your prayers!! The other bummer is that unless her platelets come back up in the next couple of weeks, the doctor has advised us from taking our 2 week road trip :( Of course we will do whatever is best for Ella but we are REALLY looking forward to this vacation. He is just concerned about bleeding issues that can occur with low platelets. Hopefully she will get back on track before then.

These pics were taken in Corona today on our way home from the oncologists. Its a nice little mall area and we stopped for dinner and then just sat by the lake and enjoyed the cool evening breeze. It was VERY hot today so the cool down felt wonderful.

Sunday, July 19, 2009

Troublemaker & A Prayer Please

First things first.....please keep Ella in your prayers as tomorrow we head off to our monthly visit with the oncologist to make sure that there are no bad cells growing in her blood...i.e. leukemia cells! I get nervous for every visit for fear that this will be the time we get the bad news. But she seems so healthy so I just hold on to that!!!

Secondly....now that she is pretty much crawling (she still refuses to bend her left leg when she crawls and sticks it out to the side) Ella is everywhere!!! Her favorite toy seems to be the little white thing on the end of all the door stoppers. She has found almost every one in the house and pulls it off effortlessly. I guess this is one time that I am glad she doesn't put anything in her mouth. I was so use to being able to put her down somewhere and have her be in that same room when I came back but now she almost always moves to another room. And the cat food and water......her radar takes her right to it, always!! I put it down at night and when she naps but sometimes forget to pick it up before she sets off. I haven't found a good permanent place to put it that she can't reach...oh well!! She is obsessed with the cat and follows it whenever she can. She is NOT NICE to the cat but the dumb thing never runs away (at least not until she has been tortured a few times) In the picture below, she has the cat cornered behind the coffee table in between the couch and wall. I knew it was only a matter of time before there was trouble. I think she ended up with a nice little scratch (probably while I was taking the picture)

Tuesday, July 14, 2009

Visit To Bakersfield To See Cousins and Special Blogging Friends

We took another mini vacation up to Bakersfield (about 3 1/2 hours away). My cousins moved up there last year and we hadn't been up for a visit yet. Also, Emily and Justin http://emilyquicknfamily.blogspot.com/ were also in Bakersfield visiting Emily's parents so we had another great reason to visit. As it turns out, Darlena and Brayden http://lehnickfamily.blogspot.com/ live only a couple hours away and also came down for a visit. So on day one, we visited with my cousins and spent the night with them sharing a couple of yummy meals. Then the next morning we drove a whopping 9 miles to Emily's parents home and enjoyed a yummy lunch and some great conversation. My visit started off a little shaky as Ella decided to show a new side of herself. Let me preface this by saying that it was her naptime. But as soon as we walked in the door, she started crying...hysterically!!! Every time Justin would do a little play yell (which Ella does ALL the time) she would break out in hysterical crying again. I have never seen her do this before. Finally, after a few trips outside, she fell asleep on my shoulder for a few minutes and then woke up ready to join the party. She finally joined the boys on the floor and started to interact. (whew!!!) I can't begin to explain how nice it is to meet up with families that I have gotten to know so well online. It really feels like we have know each other for a long time. All three of our kids are within a month of each other so it was fun to see who has mastered which skills, who has how many teeth, who eats what, etc. etc. Let me tell you what I really learned. All of our children with Ds will do things at different times and at their own pace. One may crawl sooner, one may stand sooner, one may get teeth sooner...you get the picture. But the main thing they all have in common.....beyond adorable!!! All three of these kiddos knew how to smile when the camera was pointed at them. Poor kids...obviously their moms are picture crazy!! Emily and Darlena...I had a wonderful time with you and look forward to our next visit. Emily, please thank your mom for opening her home to us. She was wonderful!!! I think my goal in life is going to be to hit the road and meet as many of my "blogging" friends as possible. Every visit fills me such joy and truly gives me another friend for life. We have a family wedding in TX coming up and we are hoping to take the long way and visit some friends in Utah (not on the way to TX) as well as meet a few in TX.

Ella sitting in the child seat in the
Wendy's bathroom on the way up to
Me with my cousin and his wife

The girl cousins (minus my oldest who was
in Palm Springs with a friend)

Ella meeting my cousins BIG dog

Doesn't it look like she is being surrounded
by a pack of wolves??

Big sisters with Ella and Justin

Ella and Brayden

Brayden and Justin

Ella, Brayden and Justin right as Ella
was finally warming up

Brayden and Justin

Ella admiring her homemade bows given to
her from Brayden's mom Darlena....thanks!!

Brayden, Justin and Ella. I think Justin is
thinking about pulling Brayden down!!

Finally got them all propped up on the couch

Me and Ella, Darlena and Brayden and
Emily and Justin

Sunday, July 12, 2009

15 Month Checkup

I took Ella in to the see her pediatrician a couple of days ago for her 15 month checkup. She weighed in at a whopping 22 lbs 3 oz which is in the 25th percentile on the regular growth chart and OFF the chart for the Ds growth chart. She is 30 inches long which again is 25th percentile and OFF the chart!! Not bad for a little girl who wants nothing to do with solid foods. I guess that formula is working for her!! We actually have an appt with the OT next Tuesday to FINALLY start working with her (or is it me) on getting foods in her. I admit I have practically stopped trying but know I need to buckle down and do it. It is just so easy NOT to worry about feeding the solid foods.....but alas.....!!! We will be taking a 2 week road trip in a couple of weeks so I am thinking now is not going to be the time to start trying...do you agree??? We are going to do a follow up hearing exam sometime soon. I haven't noticed any noticeable hearing loss but she has not passed a test yet so we need to do one. Time to check the thyroid too so during her next blood draw for the oncologist....we will include this. So...other than the BIG worry of leukemia rearing its ugly head, she is doing awesome!! We will still continue with the monthly blood draws to check her platelets and look for any BAD cells. This translates to every 4 weeks, I have to expect the worst but hope (and pray) for the best.

Ella is PRACTICALLY crawling. She doesn't do it consistently but here is her latest attempt...probably one of the best so far. I am thinking that if I am going to keep posting videos...I really should invest in a video camera. My regular camera just doesn't cut it!!

Wednesday, July 8, 2009

California Beach Girls

The girls and I hadn't really done much of anything the last couple of days so today we decided to head to the beach. I don't like to be there all day so we let Ella have her nap and then hit the road about 2:30pm. It's about a 50 minute drive so it was about 3:30 when the girls feet finally hit the water. That is the perfect time to go. Weather was perfect, parking was great as the "all day-ers" were leaving. Parking is important because when it is just me and the kids, we don't have as many hands to carry since someone has to carry Ella. (strollers DO NOT work well in the sand) So the big girls swam and boogie boarded for THREE hours straight...did not get out of the water at all except when I asked them to for a picture!! As for Ella, she played in the sand, played in the water, got lots of sand in her mouth, took a nap, drank a bottle, and played some more in the sand!! There are many things to complain about in California, but being able to take a short drive to the beach and have PERFECT weather is not one of them.

Can you see all the sand in her mouth??!