Monday, March 31, 2008

We Sprung a Leak

Chelsea's been fussy at night and crying a lot, chomping on her finger (but she has ALL of her teeth.) Friday afternoon I went to pick some wax out of her ear but it wasn't wax, it was hard like dried on drainage. So I told the nurse, she said she'd have someone come look at it, and they never did...all weekend! I mentioned the ear thing to her nurse again yesterday, but I think everyone just assumed she's good b/c she's been on IV antibiotics for 5 days now (for her UTI). So last night was awful, she was acting like she was going to crawl out of her skin, I was thinking maybe gas. Finally after oxycodone and benedryl she went to sleep. Then woke up again just before 5. I was rubbing her face trying to get her back to sleep and I felt this sticky stuff. I got a flashlight and she had a bunch of goo all over her ear. I'm not a doctor, but I do know that the ear is one place nothing should be going in or coming OUT of! The nurse came to look, then went to get the resident. She came back with oxycodone and told me the resident will be in at 6 and can come see her then. We waited up until 6:20, then her pain med kicked in and she crashed. I watched for the doctor and never saw one and fell asleep. Well she woke up crying again at 9, so I took her right out to the nurses station and told them I need someone to LOOK at her ear. They said the resident came by but we were sleeping.... so finally the nurse practicioner came and looked with the otoscope. I of course warned her that her canals are smaller (she didn't know that). She looked in her good ear first and couldn't see the ear drum. Then she looked in the bad ear and saw a lot of goo. She said it was hard to see anything other than that goop. How can she possibly have an ear infection after all these antibiotics?

Fast forward to this afternoon. We got Chelsea all masked up and took her down to the ENT office. They got her right in and started suctioning out her ear. There was a TV where the procedure was magnified for everyone to see. It was gross, but interesting. They were looking for her tube to make sure it was still in place. I had to stop them and say, hey, so what's going on, did her ear dum rupture? The ENT doctor was a very intelligent person and extremely knowledgeable in her field, but didn't have the best bedside manner. She told me their eardrums can't rupture if they have tubes (as if I should have known that). I'm not sure I understood everything as she was very blunt and didn't explain things well (her nurse translated everything for me into mommy language), but here's what I understood. She must have a cold (possibly still from when we were admitted 20 days ago) and we didn't know b/c when you have no white blood cells, you don't produce snot (snot is your body's way of fighting infection). The tubes are doing essentially what they are supposed to do, allowing the fluid to drain and not building up and festering causing severe pain. This doctor told me she shouldn't be having any pain with the tubes. I do disagree with that though as she's been way too fussy lately to not be in any pain. We will do antibiotic drops in her ear twice daily for a week. This shouldn't interfere with her going home (if we get counts this week). She explained that these antibiotic drops are 100 times more potent, and it's more efficient to put the medicine in the area it is needed instead of giving a general antibiotic that runs through your body. I hope it works, I really want her to start sleeping better. She is much happier and active when she's well rested.

Saturday, March 29, 2008

Edited to Add More Beautiful Faces...



Does it get any more beautiful than this?

I Am Hot

No, not like you're thinking, I haven't been "hot" since I was 21!

I'm hot as in, livid, but I've actually let myself calm down just a bit. For those of you who don't like to read updates that include complaints or bitterness, be warned, you may want to stop reading here.

So here's how our PT session went yesterday. Let me start by saying the PT walked in on DH and I kissing, although she didn't see anything. Don't worry it was completely PG as we were dogpiled on the bed with dear Chelsea, she won't let anyone kiss or hug without being part of it! :) I was just getting ready to leave for the weekend.

Here's our conversation from there:
My thoughts are in italics...

PT: So we were going over Chelsea's progress and my evaluation from last week and we think she's doing great. Her skills are in the 18-20 month range with a few in the 24 month range. (Chelsea is 26 months.)

ME: Great

PT: So I think we're going to step back for a while and just check in every other week to see if there's anything you need help with.

ME: HMMM, you know she's not getting any therapy when we go home right? This is all she gets right now until we're done with treatment.

PT: Yes.

ME: Well, the reason she's doing so well is because we've stayed on top of her therapy and make sure she gets what she needs. If we stop now, she'll fall behind, don't you think?

PT: We can give you handouts on things you can work on with her.

ME: No thanks, I've got plenty of handouts
... I've gotten so many handouts you would think I'm a PT, OT and Speech Therapist.

Then she directs her attention to Chelsea.

PT: Come here Chelsea, do you want to play? Show me how your Ernie doll works.

She fiddles with the foot looking for the on button as Ryan directs her.

PT: What am I retarded?

Can you see my eyes popping out of my head? Ryan and I look at each other in shock and disbelief. Did our physical therapist who works at a CHILDREN'S hospital with kids with special needs just say the R - WORD???

ME: WELL, I THINK I BETTER GO NOW.

Ryan: To be honest, that word kind of offends us.

double take, did my husband just say what I think he did?

PT: Oh no, I wasn't calling her that, I was saying that about myself.

duh? ... she doesn't get it.

ME: I know, but Chelsea is considered (insert R word here) and when you use it in that manner, you're implying that something is undesirable or unwanted...

PT: Well no, I don't think of her like that. She's just a little toddler, a little girl with Down syndrome. I'm sorry. I love working with special needs kids ... then she goes on and on about how saintly she is to work with special needs kids and how some people ask her why she would want to work with (insert R word here) kids ... and apologizing over and over.

seriously, is she getting it?

ME: Well we don't mean to make you feel bad, we just feel like we need to educate when the opportunity arises.

PT: Well thank you, I'm sorry ... yada yada ...

That's about where I left. In all fairness, she was very apologetic. And I have to tell you I left the hospital with a big smile on my face. You're probably wondering why ... because I just heard our therapist use the nastiest word on the face of the Earth ... NO ... because my dear husband just stood up and advocated for our daughter!!!!! Not that he hasn't advocated for her the past two years, but he generally doesn't let that stuff get to him. He's generally pretty passive and just blows those things off, but something has changed about him (more on that later). I was so proud of him, I was beaming. At the same time I was sad that I was really going to walk away. I was going to leave and abandon the opportunity to educate someone who plays a large part in the lives of many children with special needs. Thank you Ryan. I am proud to be your wife.

I suppose now would be an appropriate time to add this to my blog.

Friday, March 28, 2008

We Have Company...

Rough night again last night, and a sleepy morning, but around 11:30 she finally started to come out of it. She hasn't eaten anything today, but she's still drinking. She had speech a little while ago and cooperated but wasn't her normal bubbly self. Guess who's here today though?



I'd say she's pretty happy to see him, don't you think?!

I'm headed home for a couple of nights to finish recouping from this cold/sinus infection, whatever it may be. I've got a huge box of mascara at home so will be stopping at the post office tomorrow. If you're not in the first group of mailings, don't worry, I've got another order coming and I'll be ordering again next week. Thanks for your patience!

Thursday, March 27, 2008

A Bit Less Active Today

Today was not our best day. It may have been one of the worst days Chelsea's had since she started chemo. She awoke many times last night crying, presumably because she had so much pain every time she peed. I would comfort her and rock her, then she would fall back asleep. She had a couple doses of pain medicine throughout the night and while it doesn't take the pain away, it helps a little. I was told that she's likely having bladder spasms which can be very painful. She woke up crying again this morning, and I was pretty groggy from the night, but I found her nurse and she gave her another dose of oxycodone. We got up and as she was sitting in her high chair I noticed she was awake, but in a trance. She was a completely different kid. It was likely the pain meds, but I don't remember them ever effecting her this significantly. Between 10-12 she dozed next to me. She would sleep for a few minutes then sit straight up, eyes still closed, then I would lay her down again. One time she sat up picked up my hand and put it against her cheek, tilted her head and went back to sleep. It seemed as though she was half sedated most of the day. We own 5 Signing Time videos and I watched each one of them three times today. I need to find another movie that she will watch!

She took another lengthy nap from 3-6. We were out near the nurses station watching another little girl play and Chelsea just laid on my lap. Finally around 7:30, her curiosity got the best of her and she mustered up just enough energy to walk over and see what the girl was playing. After a cup of apple juice she seemed a bit more energized and began cruising the halls and visiting friends. Although not her typical perky self, she was acting much more Chelsea-like. She virtually ate nothing today which probably makes you pretty tired (I wouldn't know, I tend to make up for her not eating ... we can't waste the food can we?!) We watched a few more Signing Time movies and she went to bed just before 10. They started her on a new medicine this afternoon to help with some of the pain she's having every time she goes to the bathroom. I think it may be working as she had a wet diaper earlier and she didn't cry. I hope it's working. My cold is ever so slowly improving and I've got a monstorous headache to boot tonight, ... I'm looking forward to a full nights rest.

Oops, forgot one...

After posting yesterdays pictures, I realized I forgot to post one of myself, so in case you were wondering about me ... I'm sorry I don't look the best, I was out of mascara.

Wednesday, March 26, 2008

A Day in the Life

For those of you wondering what our days here look like, come take a peek. I know you probably think I sit around watching soap operas and eating bon bons ... well ... I'll let you be the judge:

As I got Chelsea dressed this morning, I noticed her dressing was open along one side, exposing her central line ... so although she wasn't due for a dressing change until Saturday, we did a dressing change today.

First they put the hand sanitizing foam all over the dressing. The alcohol loosens the adhesive on the dressing.
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This does not make her very happy, we better let it soak in for a minute, and turn on Signing Time to distract her.
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Dressing is off, ouch that hurts! Notice we've got her held down, she's good at touching the area especially after we've cleaned it.
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Speaking of cleaning, the nurse uses a sponge with cloraprep to clean the area. (what does cloraprep make you think of? clora ... clorox ... seriously, it can't feel very good on already irritated skin.)
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Let it dry!
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Here's the new dressing!
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All done!
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Now we have to draw some blood to verify her blood type before she gets any blood products ... what did it change since last time?
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Yep, blood
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Headed down the hall to get some vitals while we wait for platelets.
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Break time ... still waiting for platelets, why not take a rest in the middle of the hallway?
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Lovin on a cute boy.
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We've got platelets, no more bruising!!!
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Platelets run by gravity, the higher up you hang them, the faster they go in!
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We laid down for a nap after platelts, then they came in to hang her blood. While any blood products are running they take vitals often to make sure the child isn't having any reactions to the products. What do you know, missy spiked a fever ... so we took some blood cultures of each line.

Culture bottles
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Drawing cultures ... Chelsea not feeling so hot.
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Nothing like a little bit of Tylenol to break a fever! Still receiving her blood (it takes 2-3 hours.)
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O positive
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And because of the fever ... here she is hooked up to antibiotics (and blood is still running) while watching Signing Time.
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I know what you're thinking ... jeez does she photograph everything? Well, ... no. Believe it or not, I left out part of our day. Chels has been having some crying spurts in the night and has also been pulling at her diaper for a few days. Apparently nobody else thought ... maybe something was wrong down there. So, I asked about a urinary tract infection and they agreed to take samples (they had to do it twice, the second time was kind of interesting, it involves taping a plastic bag to an area I don't think anyone would like to have a plastic bag taped, but it sure beats a cath!) I think they were just trying to humor me by taking the samples, but what do you know ... she's got a UTI !!! So that explains the fever spike and now we can get it all cleared up with antibiotics. Poor baby, she's had this for at least 4-5 days b/c she was pulling at her diaper last weekend. Ryan had a conversation with the nurse Sunday about it and they even charted it, but not a word was ever said about it again. Well I noticed her pulling at her diaper again last night, and then this morning she screamed when I tried to change her diaper. I KNEW something was up. It doesn't take ESP to figure out what's going on here, honestly, I'm a little disappointed this was missed by so many people. I think I'm going to have to bring it to her doctors attention. I thought that was the kind of stuff they talked about in rounds? They probably get to her and say, oh yeah, Chelsea's here for count recovery, next?

When her blood was finished and I was looking for our nurse to turn the pump off, a child on our floor was 'code blue'. Everyone was running around and one nurse steered us into the playroom so we didn't get run over. Eventually I made eye contact with a nurse who wasn't helping with the other child and she stopped the pump for us. I don't think we know this little boy, but we'll be praying for him. He's down in the PICU now.

After that, we called it a day. Chelsea got more pain meds as she's still having a lot of pain when I change her or when she goes potty. I know she has a high tolerance for pain, so when she screams like she has been, I get her drugs right away. I hope you enjoyed our pictures from today ... can't wait until I'm taking pictures of her at the park or the zoo or anywhere but here!

Tuesday, March 25, 2008

Blood, Platelets and Afrin

Chelsea was so excited to see me. She wasn't over enthusiastic, but she gave me a giant hug and didn't want to let go. When Grandma was leaving, she grabbed me by the neck to assure I wasn't going to try and sneak out on her again. And she's back to pulling my mask off ... poor kid, she'll do anything for kiss from her Mommy. She didn't fall right to sleep b/c she was pumped about having me back, so we sang some songs, did some finger plays and gave each other lots of hugs and kisses. Technically, I've been doing a lot of kissing the inside of my mask, which is really weird ... gosh I can't wait to get over this cold!

Apparently the doctors decided Chelsea didn't need platelets or blood today. I was always told they gave blood transfusions when a child is below 8. Previously they warned us that when they're hemogloin falls this low, they're prone to dizziness, headaches, lethargy ... all of which Chelsea would likely have a hard time communicating to us. It seems a bit cruel to me. By the time labs are scheduled again (Thursday), her hemoglobin will likely be under 7 at the rate it is currently dropping. So because Chelsea is a tough kid with an unstoppable spirit she gets no blood today. Seriously, does it make a difference whether they transfuse her today, or tomorrow or the next day? No, not really. My mom was told today that they are trying to keep the total number of transfusions that she receives as low as possible. The last two rounds she has managed to get only one platelet and one blood transfusion the entire hospital stay. She then rebounds and her numbers rise on their own. So no, it doesn't really matter when she gets the transfusions. My opinion (as if you don't already know), ... give her the transfusions already! Poor kid, she hardly jabbered tonight and was pretty puney, not true Chelsea form.

Aside from being weak because her blood is so low, I have to stay on constant guard. Typical, non active people get platelet transfusions when they fall under 10,000 ... Chelsea typically gets them when she falls under 20,000. Since she was 22,000 this morning, I know she's at a huge risk for bleeding. Once again, by labs on Thursday, who knows where she'll be by then. God forbid she so much as bumps her head against the crib while sleeping. She's likely to bleed out her ears! Those of you who know Chelsea, know what a restless crazy sleeper she is. She's been known to sit up in her sleep ... she'll get all the blankets and pillows in her bed pushed to one side, then she'll prop herself up against them. It's extremely cute, but there's quite a bit of tossing and turning in between.

As for me, I'm feeling pretty crummy myself. Benedryl, Afrin, double layered Kleenex ... these are a few of my favorite things. Seriously though, who the heck invented Afrin? What a great product. I panicked a while ago b/c I though I'd left mine at home. I envisioned myself leaving the hospital and making a midnight run to the CVS down the street, which so happens to be in the middle of the ghetto. Yeah, I would do anything for my Afrin. Can't sleep without it when I have a cold. I actually didn't even know it existed until my roomate in college introduced it to me. Thank you! Now I look back and find it border-line abusive that my mom never let us use this when living at home. What other secrets have you been hiding from us Mother?

Good night for now, I have to leave you with the most peaceful sleeping beauty EVER!





Transfusions, Helmets, and Leukemia Questions Answered

Ryan came home last night after putting Chelsea to bed and my mom arrived at the hospital shortly after. When Chelsea woke up this morning she cried for quite a while. I think she was worried that she went to bed with Daddy and then woke up and neither of us were there. She warmed up to my mom again quickly though and is doing fine now.

Looks like Chelsea will be needing platelets and blood today. We're still waiting on the doctors to round to find out what the plan is. It seems like it takes 12 or more hours to get those things going so it may not be until tomorrow anyways. I had my mom put her helmet on knowing what a little crazy kid she can be and that can be dangerous when your platelets are low.

ANC - 189 (we're getting there!)
PLT - 22
HGB - 7.7

I wanted to address a question someone emailed me:
Why does Chelsea have to receive more chemotherapy if her bone marrow tests showed she is in remission?

First, the bone marrow aspiration is only a small sample of bone marrow, it's only a small piece of the whole picture. It is possible that there are just a few leukemia cells hiding in her bone marrow. It's highly unlikely after four full rounds of chemotherapy and two bone marrows showing her remission, but it is possible.

IF, by some chance there was even a few cancer cells left in her body, they would be SUPER cells that were able to hang on after all the chemo she's already received, they would be the strongest of the strong cells. SO, if we stopped the chemo now, and they survived, and multiplied, we would no longer be able to use this chemo. That would be worst case scenario of course AND it's something we have no need to worry about because we are continuing with the last two rounds of chemo. I am confident NO leukemia cells will survive all of this chemo ... once we are finished with her treatments, she will remain in remission FOREVER! (Positive thinking guys!)

Lastly, I must have led some of you to believe that she is finished with chemo for good, but she's only finished her 5th round. She still has one more round. Yep, crazy huh? I'm thinking the same thing, ... will this ever end? If things go well we should be finished by the end of May, just in time for summer!

I hope that clarifies for any of you who were confused.

Monday, March 24, 2008

Why do Mom's Get Sick?

I'm home, taking a break. Being sick is no fun, but being sick and trying to take care of your sick child (while wearing a mask) is even less fun. Yesterday she just kept pulling my mask off b/c she wanted to give me a kiss. She's such a doll, it just melted my heart. The good news is ... because of my awesome blog reading friends, Ryan was able to call in today and stay at the hospital with Chelsea! He was worried b/c he took Friday off, but we've been so blessed, we're able to make it work without getting into trouble. He will go back to work tomorrow (he doesn't want to lose his job ;) ... and my mom is going to stay with Chelsea for me so I can have another day off. Surely by tomorrow night I'll be on my way to feeling better.

After I left last night, Ryan called and said Chelsea wasn't feeling well. She kept pulling at her diaper yesterday and we couldn't figure out why, but one nurse speculated that she's got mucusitis (the sores that go from your mouth all the way down your intestinal tract and make it very difficult to eat and are very painful). He reports that she's doing well today so far, but I've got some questions for the doctor so I'll be calling up there.

I'm missing my little angel already, it kills me to be away, but she can't afford to get sick, nor can any other kids up there. While I'm home I'll be updating my WDSD montage ... I managed to miss a couple of photos and I'm so sorry for that. Either they got emailed to the wrong account or I couldn't open them, so if I missed you, please try again and make sure you email me at chelseasmommyt21@gmail.com I'm also working on answering emails and getting your MK orders together. I'm still waiting on products from the company, so I appreciate your patience. Your packages will be in the mail as soon as I receive them! Check out our mascara total, I'm going to update it now!

Saturday, March 22, 2008

Happy World Down Syndrome Day! (a little late)

VIDEO UNDER CONSTRUCTION ... VISIT LATER TO VIEW!

A couple of people were correct that World Down Syndrome Day was 3-21 representing Trisomy 21 (the triplicate of the 21st chromosome.) My hopes for individuals with Down syndrome? That others will see the potential that we, as parents do. I have nothing but the highest of expectations for Chelsea, she is capable of anything she sets her mind to. I can't even imagine what she'll grow up to do, ... great things I'm sure!

Now for some things floating around in my head since I have a captive audience ;)

Did you know:

* 1 in 700 babies are born with Ds
* over 90% of women who learn their fetus has Ds (Trisomy21) terminates the pregnancy
* most babies with Down syndrome are born to mothers under the age of 35 (there's a lot more of us young mothers having babies!)
* Down syndrome doesn't usually occur b/c it 'runs in the family'. Our geneticist explained it as a simple and random case of a 'sticky' egg ... as the cells began dividing at conception that chromosome 21 stuck together and therefore was copied as a triplicate in each cell of Chelsea's body.
* I can't stand it when people (especially medical staff ... doctors/nurses wink wink ...) refer to Chelsea as a Downs baby, I am a big believer in PEOPLE first language. Down syndrome doesn't define her ... she's a kid first, so I prefer, 'a child with Down syndrome.' Would you ever say, "wheelchair kids are so happy." ??? Probably not.
* Down syndrome is not a DISEASE ... hello?!!! God knew exactly what he was doing. Cancer is a disease!
* One more thing I can't stand? The R word! When you hear people use it, will you please remind them it's rude, ignorant and inappropriate to use that word to describe something that is ugly, annoying or unlikable. Please choose another word, as I see nothing ugly, annoying or unlikable about Chelsea!

I'm done, thanks for listening!

Please know that I enjoyed making this so much!!! I don't think I've ever seen a cuter bunch of kids, they are absolutely beautiful! Thank you for sharing your children with us!

Surprise!

Surprise! I'm sick... yep, not the surprise you were waiting for huh? I seriously apologize, but I zonked last night working on my project with an awful headache. Then I woke up this morning with an awful sore throat. I did make it to prompt care and THANKFULLY it's NOT strep throat (I've had that lots, so I was very worried.) Looks like it's just a cold, or maybe allergies and I'll just be wearing my lovely mask around for a while.

Quick update, then I'm off to finish my project. Chelsea's also been under the weather today. Don't mistake me she's still been the lovey she always is, and has been playing and giggling, she's just had to take a couple of breaks to ... well ... throw up. She's hardly eaten anything but a few bites of food all day, I'm afraid it's those darned mouth/throat sores. Unbelievably her ANC went up and was 980 this morning, but she had 0 mono's which indicates she's on her way down. I'm afraid she's not going to be able to enjoy Easter as much as we'd like her to, but we're thankful we've still got her and that we're all together.

Please say a prayer for a little boy on our floor. His entire family has been with him today to say their good byes. Soon he will have his wings and will be out of pain. Our hearts are heavy up here on 4 Henson tonight.

****On a lighter note, I just logged on and my site had a makeover!!!! How cool is that?! Thanks to my friend Rebecca. Looks great, thank you girl!

Friday, March 21, 2008

Happy World Down Syndrome Day!!!

Quick update ... Chelsea is officially finished with round 5!!!!! Of course that's just the actual chemo part, we'll be here another few weeks as always! The funny part, she just threw up a little bit ago ... healthy as a horse during the chemo, and now she gets sick! I thinks she's feeling better now, nothing like a little puke to get your tummy settled down!

Ok, I spoke too soon, just had to break from blogging for some more gagging. Her nurse was flushing some saline into her line and for some reason it made her cough and gag. Ugh, poor baby.

The boys made it up here bright and early this morning!!! Yeah!!! Logan's super ornery, we've got some behavioral issues to work on with him. I've got one last prayer request for you all today. My stepmom was admitted to the hospital last night. She hasn't been feeling well for some time, but they're not sure what's going on, hopefully we'll get some answers today. She's way too young at 46 to be so sick, so please pray that they'll get things figured out and get her home SOON.

Lastly, check back with us later tonight, I'm working on my project for WORLD DOWN SYNDROME DAY!!! I think you'll really enjoy it. And for those of you who don't have a child with Down syndrome, do you know WHY today, March 21st, is coined World Down syndrome day? Leave a comment if you know!

Thursday, March 20, 2008

To My Blog Reading Friends

Chelsea's boyfriend Rhett is having surgery tomorrow. Poor kid is just months older than Chelsea and has been through quit a bit in his lifetime. His family is very nervous about the surgery tomorrow because it was just over a year ago that they had a terrible experience at the hospital. Rhett was accidentally overdosed by a nurse who miscalculated the dosage of pain meds. He was given approximately TEN times the amount he should have had. It's a result of this awful incident that he has had many many life threatening side effects. I think that's why he and Chels were meant for each other though, they're both super STRONG kiddos! Now if you're so inclined, could you pop over to their blog and leave a message for them? I know they would greatly appreciate it! Thanks!

Recycling: March Madness

Originally posted, 3/15/08
Didn't want this to get lost, let's beat our goal of 100! If you haven't yet, please email this link to your friends and family. AND Thanks to your help, Ryan is taking tomorrow OFF ... PAID (with MK funds of course!) I'm so excited! If you want to do more shopping click here.

I'll admit, I'm going to self promote here, so if you don't like it, you don't have to continue reading ;) There's something that's been weighing on my mind lately, so much so I haven't been able to get much sleep in a few days. As you know we're at Children's Mercy for round 5 of chemotherapy. This will inevitably be a tough round. Chelsea will receive chemo for 7 days straight, the longest period of time yet. It's always stressful and scary when she's on chemo, but on top of it I'll be chasing my cute little 2 year old around on a tight leash trying to avoid yet another break in the hickman (you know that central line that runs to a major vein in her chest...it breaks you get a couple of things, lots of blood and chemo on the floor, and risk of severe infection) ... so no big deal there right? ***sigh*** Needless to say I'll be in tip top mommy form for those 7 days, keeping an ever close eye and chasing her like never before.

Now to the part I can't get off my mind. I wish my husband could be there, at the hospital with us. It breaks his heart that she is on these awful chemotherapy's and he can't be there to snuggle her, rock her to sleep, or chase her around. It's scary for both of us and it kills him that he's not there. It's also a great relief to me to have his help as a ratio of 2 to 1 is about what we need when it comes to little Chelsea. The truth of the matter is though, we just can't afford for him to take off any work to be there. In order for us to pay the bills, he must work his 40 hours. Wednesday morning, he went in at 5am so that he could get in 6 hours before we left for the biopsy. Every hour counts, and that's all he can think about lately. You're probably wondering about benefits, paid leave etc. with his new job, but that doesn't really kick in until you've been at a company for a while, and to tell you the truth, the company is small enough we're finding the "benefits" we had hoped for aren't really there. While they offer insurance to their employees, we would still have to pay for the insurance. Yep, not even Ryan gets a reduced or free plan. So we're sticking with our insurance b/c believe it or not, it's cheaper to go out on your own than for the plan he was offered from the company.

I apologize for spilling all of our business, but here's the part where I ask you for your help. Do I want a handout? Absolutely not. I'm on a mission ... and here's my plan. My Mary Kay business has taken a back seat while Chelsea has been going through her chemotherapy, I just haven't had time to focus on it. BUT...that being said, I am still a consultant. So I want you to think seriously about the ONE thing all women use, ONE thing all women need ... mascara. I've done the math, and for every 20 mascaras I sell, we could afford for Ryan to take ONE WHOLE DAY off of work to be with us while she's on chemo! It's like the paid days off he unfortunately doesn't get. I know it sounds like nothing, 20, no big deal right, well that's where I need your help! Let me tell you why you will benefit from helping us:

1. If you're a woman, you use mascara (except for that one who will comment and say I don't use it). If you're a man, trust me, your wife and mother and sister wear mascara.

2. You're going to go buy it anyways, so why not save the gas and let me deliver it to your door. There's no need to drive all the way to WalMart for it! Mary Kay Ultimate mascara beats any drugstore mascara in a heartbeat anyways, no clumping and lash lengthening, you can't beat it.

3. You need to replace your mascara every 3 months for sanitary purposes (no one likes bacteria in their eyes right?) So even if you just bought one recently, you can always buy another now, and keep it in the box until you're ready. The three months don't begin until you open it and begin using it!

4. I can mail mascara! If you live out of state (or out of the area) I'll just ship it to you.

Interested? Here are the details.

I am going to keep this post at the top until we meet our goal...20 mascara's! If you know a woman, you might just forward her the link to this post so she can order a mascara! You can
















via paypal, or if you'd prefer the old fashioned way (mailing a check) please email me for our address. For paypal purposes, the total is $16.12 per mascara (multiply accordingly if you're buying extra for, ...your mother, sister, friend etc.) If you are out of state please add $1 for shipping. If you don't have a paypal account, that's okay, click on pay with credit card. Lastly don't forget to add your shipping address to the paypal information! I will ship our black ultimate mascara (we also carry black brown and waterproof). If you'd like to do more shopping, that link will take you directly to my Mary Kay website where you can order.

I appreciate your help more than you could ever know. Chelsea appreciates your help. Ryan, he will be delightfully surprised and downright stunned when I tell him we've sold enough that he can spend a day at the hospital with us. I will keep a tally of the sales on the side bar, so watch out, we're on a mascara mission!

Wednesday, March 19, 2008

Calling All Friends With Down Syndrome

I am creating something special and I need pictures of your kiddos. If you would like to participate, please send a picture of your beautiful child (any age) to me at chelseasmommyt21@gmail.com (note this is not my normal email addy!) By emailing your picture you're giving me permission to use it and show it on my blog. Thanks, and don't forget to check back soon for my surprise!

Guess What I Did Today?

I put Chelsea in her crib naked (ok, she had a diaper on of course), threw her pants and tshirt in the bed, and I left the room for a few minutes. When I came back in, look what I found!!!!




Okay, so they're backwards, but they're on all the way!!!! Woohoo!!! She was so proud of herself! You know the funny thing is I really don't know at what age 'typical' kids start dressing themselves, I just know we've been working on this for a couple of months, and for her to work so hard and get it ALL on her own, just thrills me. In your own time baby, in your own time!!!

Tuesday, March 18, 2008

WAY too cute not to share...



As you can tell, this photo was an accident, but I'm so glad I got it. That smile brings tears to my eyes!

Today we repaired a repair...

Well to be honest today wasn't all about fun and games. After lunch our nurse was hooking up Chelsea's benedryl and noticed a tiny bit of water when she flushed her line, yep, Chelsea had ANOTHER hole in her Hickman. Remember, she had a hole the day before we left from the last round. Well this was the third repair today, and it was actually a repair of a repair. The IV therapists aren't sure how much more they trust her Hickman, since it's made up of different pieces of repaired tubing. They're talking about just taking this one out and completely replacing it sometime soon. More on that later, for now she just has to get through the next few days of chemo with the line she has in. Just in case you were curious, I documented them repairing her line with photos as always!


Chelsea with her line all clamped up for protection awaiting repair.


Creating a sterile environment, it's like surgery except it's not in the OR and it's not on a person, it's on a tube!


They have to clean the area for 6 minutes!


Somehow I missed taking a pic of her cutting the line, but you can see there's a line where the old and the new tubing meet. Here, she is putting some high powered glue, to bond the two tubes together. Then there's a little clear plastic casing that will go over that spot, and she'll push more super glue into the area.


And voila! A new Hickman! They had to wait 4 hours to use it, so after the four hours they drew blood cultures from the line to make sure no infection is growing from it being exposed with the hole. The hole was tiny the nurse said. We're not sure how she managed a hole in the white side b/c the side that the chemo is running in non stop is the red side. That's the side that's constantly stretching when she pulls on it or runs away from me too quickly. I was worried she may have bit the hole in the white side since I have caught her with that tubing in her mouth. That could open it up for all kind of bad infections, so we're praying she didn't do this. Evidently bacteria in your mouth, and central lines, don't mix well. It could be VERY VERY dangerous she told me.

Should we really be having this much fun?

Many of you know that Chelsea's all time FAVORITE thing to do is watch Signing Times. This kid wouldn't even glance at the TV until my fabulous friends at T21 sent her the Baby Signing Times movies last fall. She's fallen in love with them, and we've even added a few other videos in the series to our collection since then. Her signing vocabulary is out of this world, she knows more than I do since I don't sit down and watch the videos like she does! I'd say she easily knows over 100 signs! And...since signs count as 'words' that puts her right on track language wise for a 2 year old. Of course I'd still like to hear some more words coming out of her mouth! To the point: I received an email from the company that they were holding auditions for their next taping, and who do you think I thought of immediately? Yep, I think Miss Chelsea would be perfect. Talk about the perfect "Make a Wish Trip!!!" I know she's not old enough to take a make a wish trip, but I sure would like to make this wish come true for her. Could you imagine her on the set of Signing Times, meeting Rachel?!!! Wow! To audition, the children must sign at least 4 of the following 8 words; more, milk, apple, flower, cheese, wind, star, cloud. Here's our two best shots at a home video audition. What do you think? Vote and let me know which one to send in!

Signing Times Audition, Take 1


Signing Times Audition, Take 2

Happy St. Patrick's Day!





Well you have all kept me quite busy today, I know what it means to "work" from home (or the hospital) right now. The funny thing is we've had more visitors today than ever before, we set a record in one day! Let's try and hit 700 tomorrow. Tuesday is a big blog day right? Keep spreading the word!

In light of some new visitors, I'd like to post a short little history of what's been going on with Chelsea. This brief explanation should help catch some of the new readers up to date. Of course you're always welcome to go back and read the whole thing!

Chelsea was diagnosed on September 26, 2007, at 20 months old, with
Acute Myeloid Leukemia (AML). As many as 1 in 200 children with Down
syndrome will develop leukemia in their lifetime. Fortunately the
prognosis is good. Children with Ds still have to endure the strenuous
chemotherapy treatments, but something about their extra chromosome
makes their body more sensitive to the drugs. While this means smaller
doses than for typical children, it also means they have much more
severe side effects later in life. Chelsea has completed 4 rounds of
chemo and is currently receiving her 5th round. Because AML is an
aggressive cancer, it must be treated aggressively. Each time she
comes in for chemo, she must stay for 3-5 weeks in the hospital until
her bone marrow recovers from the drugs, otherwise her body would be
very fragile and she would likely suffer from life threatening
infections that would cause little or no harm to those of us with
strong immune systems. When she does go home between treatments, it's
only for 1-2 weeks and she usually has to stay at home. On the rare
occasion we're allowed to venture out, she has to wear a mask at all
times to keep her healthy. She has one more round for a total of 6
rounds of chemotherapy. Surprisingly after all of the dangerous
sickening drugs they've pumped into her little body, she's remained
happy, spunky and as loving as ever. When everyone else is feeling
sad, or depressed or complaining about how bad cancer sucks, we all
just look at Chelsea and her beautiful smile. If she can do it, so can
we!

Uh-oh, I'm all tangled up (this is nothing new!)


bup bup bup!!!




We didn't have a party or a parade, but who needs that when you've got a balloon?!!! Chelsea's counts are coming down quickly! Her ANC was only 500 today, down from 4,400 on Saturday. The chemo's working. She's drooling a lot today too, so she may be getting mouth sores...although she ate very well tonight, a whole plate of spaghetti. What a mess!

Sunday, March 16, 2008

Lights Out

Chelsea is doing remarkably well today. It's like she just snapped out of that puniness yesterday and hasn't looked back. She's been on the go all day. In fact, it took 3 hours to get her to sleep, she finally crashed at 11pm. She's had benedryl and oxycodone and she was still going strong. I hope this isn't cruel, but as my last resort, I wrapped her up in a blanket like a burrito, just like we did when the kids were babies. That's the only way I could calm her down. Otherwise she was hitting me scratching me, picking my nose (yep), licking me ... I had to create some sort of straight jacket to get her calmed down and to sleep. Yes, she cried and didn't like it one bit, and just before I was about to unwrap her and give up again, she crashed! I can't figure it out. It took an hour and a half to get her to sleep for her nap. It's like she's overstimulated from the chemo or something, I don't know. Then a few minutes ago the nurse came in and hung another bag of chemo and after she left, Chelsea sat straight up in her crib. I went to check on her and she was sound asleep ... sitting up in the crib! Something weird is going on with her sleep cycles, maybe the doctors will have some insights on that tomorrow.

I'm going to leave my March Mascara Madness challenge up on the side bar to the right all month (with a link to the original post), so continue to spread the word. Your help means more than I can ever express to you all. I'll leave you with a few pictures of my goofball. She's really enjoyed posing for the camera lately.



Saturday, March 15, 2008

March Madness

I'll admit, I'm going to self promote here, so if you don't like it, you don't have to continue reading ;) There's something that's been weighing on my mind lately, so much so I haven't been able to get much sleep in a few days. As you know we're at Children's Mercy for round 5 of chemotherapy. This will inevitably be a tough round. Chelsea will receive chemo for 7 days straight, the longest period of time yet. It's always stressful and scary when she's on chemo, but on top of it I'll be chasing my cute little 2 year old around on a tight leash trying to avoid yet another break in the hickman (you know that central line that runs to a major vein in her chest...it breaks you get a couple of things, lots of blood and chemo on the floor, and risk of severe infection) ... so no big deal there right? ***sigh*** Needless to say I'll be in tip top mommy form for those 7 days, keeping an ever close eye and chasing her like never before.

Now to the part I can't get off my mind. I wish my husband could be there, at the hospital with us. It breaks his heart that she is on these awful chemotherapy's and he can't be there to snuggle her, rock her to sleep, or chase her around. It's scary for both of us and it kills him that he's not there. It's also a great relief to me to have his help as a ratio of 2 to 1 is about what we need when it comes to little Chelsea. The truth of the matter is though, we just can't afford for him to take off any work to be there. In order for us to pay the bills, he must work his 40 hours. Wednesday morning, he went in at 5am so that he could get in 6 hours before we left for the biopsy. Every hour counts, and that's all he can think about lately. You're probably wondering about benefits, paid leave etc. with his new job, but that doesn't really kick in until you've been at a company for a while, and to tell you the truth, the company is small enough we're finding the "benefits" we had hoped for aren't really there. While they offer insurance to their employees, we would still have to pay for the insurance. Yep, not even Ryan gets a reduced or free plan. So we're sticking with our insurance b/c believe it or not, it's cheaper to go out on your own than for the plan he was offered from the company.

I apologize for spilling all of our business, but here's the part where I ask you for your help. Do I want a handout? Absolutely not. I'm on a mission ... and here's my plan. My Mary Kay business has taken a back seat while Chelsea has been going through her chemotherapy, I just haven't had time to focus on it. BUT...that being said, I am still a consultant. So I want you to think seriously about the ONE thing all women use, ONE thing all women need ... mascara. I've done the math, and for every 20 mascaras I sell, we could afford for Ryan to take ONE WHOLE DAY off of work to be with us while she's on chemo! It's like the paid days off he unfortunately doesn't get. I know it sounds like nothing, 20, no big deal right, well that's where I need your help! Let me tell you why you will benefit from helping us:

1. If you're a woman, you use mascara (except for that one who will comment and say I don't use it). If you're a man, trust me, your wife and mother and sister wear mascara.

2. You're going to go buy it anyways, so why not save the gas and let me deliver it to your door. There's no need to drive all the way to WalMart for it! Mary Kay Ultimate mascara beats any drugstore mascara in a heartbeat anyways, no clumping and lash lengthening, you can't beat it.

3. You need to replace your mascara every 3 months for sanitary purposes (no one likes bacteria in their eyes right?) So even if you just bought one recently, you can always buy another now, and keep it in the box until you're ready. The three months don't begin until you open it and begin using it!

4. I can mail mascara! If you live out of state (or out of the area) I'll just ship it to you.

Interested? Here are the details.

I am going to keep this post at the top until we meet our goal...20 mascara's! If you know a woman, you might just forward her the link to this post so she can order a mascara! You can














via paypal, or if you'd prefer the old fashioned way (mailing a check) please email me for our address. For paypal purposes, the total is $16.12 per mascara (multiply accordingly if you're buying extra for, ...your mother, sister, friend etc.) If you are out of state please add $1 for shipping. If you don't have a paypal account, that's okay, click on pay with credit card. Lastly don't forget to add your shipping address to the paypal information! I will ship our black ultimate mascara (we also carry black brown and waterproof). If you'd like to do more shopping, that link will take you directly to my Mary Kay website where you can order.

I appreciate your help more than you could ever know. Chelsea appreciates your help. Ryan, he will be delightfully surprised and downright stunned when I tell him we've sold enough that he can spend a day at the hospital with us. I will keep a tally of the sales on the side bar, so watch out, we're on a mascara mission!

Afternoon Update, 3/15

We're doing much better this afternoon. She really perked up with Logan and me here. Right before lunch she was literally chasing Logan down the hallway. He was thrilled that he kept winning, but I had to remind him he did have a slight advantage; Chelsea had two miniature cords hanging from her chest attached to a pole mommy was pushing, and he was on a pedal tractor. Poor little girl though, she sure gave it her all to keep up with him, all the while screaming, "ahhhhh!" When the doctors rounded I was telling them that she wasn't feeling well and had been throwing up...they weren't buying it! She was very close to spiking a fever after her nap 38.3 (38.5 / 101.5 is an official fever at the hospital), but fortunately it's come down a bit. That's the next thing we'll watch for though.

***A few people have asked if they can help out by ordering other products besides mascara ... of course! You can just browse the catalog and then email me your order (enseno153@aol.com).

I have to be honest, I am overwhelmed by the response of my blog readers. Never did I think we could really do this in less than 24 hours! Truly amazing! Someone asked if I would leave this up for longer than just 20 tubes, and I will, so if you want to forward it to you friends, please do! THANK YOU to everyone who has ordered so far!

Unfortunately I don't have as great news to post about Chelsea. Daddy stayed with her and she had an awful night he said. She's been throwing up and feeling super puney. He said earlier she didn't even sit up in her crib, she just laid there. When Logan and I got here this morning, she was sleeping on Daddy's lap. The funny thing is though, she has perked up since we arrived. She walked for a little bit and rode the halls on her bike. She was refusing food and drink, but she's now drinking a little bit of juice, which is better than nothing. It breaks my heart. She's done so well on all of her chemo treatments overall, I think this one is really making her feel awful though. I can see it in her face. So when you get a minute if you could spare a prayer for my little munchkin. I overheard Logan in the backseat this morning saying the sweetest prayer for sissy. He said, "I hope Chelsea gets better soon and can come home with me soon." Then he did his best attempt at the sign of the cross, it was absolutely precious. I'll try and post pictures later today. I'm so thankful that Daddy will be able to take a day off this week to spend with us. This may be the toughest round yet, no necessarily b/c the chemo is harder, but they say it's harder on the kids with each consecutive treatment.

Friday, March 14, 2008

Round 5

Round 5 has officially begun! She started at 10:50 last night. I was so exhausted, but wanted to stay awake until it got started. Ideally I would have tried to stay awake for a while afterwards just to keep a close eye on her for any reactions, but I just couldn't keep my eyes open. I was so happy to see our nurse hooking up the chemo last night. She double and triple checked everything she did. That makes me feel so good to see her being so careful when hooking up chemo is likely something she could do with her eyes closed. These nurses do it everyday and while it wouldn't have to be a big deal to them, it is.

Chelsea slept through everything even the blood pressure checks every 15 minutes for an hour! I on the other hand didn't have such luck. Here's what I remember...

*start benedryl
*flush benedryl
*start zofran (anti nausea med)
*finish zofran
*hook up chemo (two kinds)
*take vitals
*pump beeping
*blood pressure
*blood pressure
*blood pressure
*unhook one of the chemo's
*pump beeping
*vitals
*diaper change
*pump beeping
START OVER! Yep, time for benedryl and zofran again!

I think the nurse and CA could have easily kept busy by just staying in our room all night! Do you know how badly I'd like to throw this darned pump out the window?!!! So....I attempted to take a nap with Chelsea this afternoon....
Did I mention they're doing construction on the hospital? I did finally doze off though....
only to be awoken by none other than.....Spiderman!
Okay, not really, just two window washers that appeared from nowhere on the window that the parent bed sits against. They were in no hurry and they were extremely noisy window washers. If you think about it, there are THOUSANDS of windows in this hospital. What are the chances they would land on 4 Henson Room 6 just as I fall asleep? Pretty slim right? Thank goodness after they were done Chelsea was still asleep and I dozed off again.....only to be awoken by.....

the pump beeping!!!!!! Guess who else was awoken by the pump this time? So much for my nap. You know after all the stress of waiting for bone marrow results, I don't think I've slept for any period of time longer than 20 minutes for 48 hours now. I may not be making any sense right now, so if that's the case, I apologize. Basically, it feels like someone is playing a cruel joke on me. I'm looking forward to that deflated sleep number bed at the Ronald McDonald house tonight.

Thursday, March 13, 2008

Wanted to add...

Just a note about the bone marrow aspiration yesterday, yes, she was sedated. They gave her fentenol and something else. She wasn't completely out, but she was drugged up enough to not know what was going on. And of course they put numbing cream on her back side before hand.

Negative


Chelsea is still in REMISSION!!!! No leukemic cells found. Huge sigh of relief here! Everyone was getting very frustrated and wondering why we were here. Now we just wait on chemo. It will take a while for them to get it made, but we will start tonight. This round consists of 7 days straight (yep, 24/7) of Ara-C, then she will also get another chemo once a day over an hour for three days. This is a new chemo, can't remember the name, but it can cause low blood pressure. Once they start that chemo they'll take her blood pressure every 15 minutes while it runs. That will be quite the challenge though as they have struggled to get a good pressure all day. It's either been too high or too low. Never a dull moment.

Still NO results! We're all kind of going crazy around here. The nurse didn't think that this necessarily means anything bad, it's just taking a while. Chelsea must be sore from her bone marrow b/c she's been reaching up to have me carry her a lot this afternoon. I think I'd be a little sore too if they stuck that thing in my hip bone! Praying for results soon! In the meantime... One of my favorite books is a movie!!!

Just in...I saw this on my message board. We'll have to find someone with the Lifetime Channel though and we'll all go over to their house to watch it!

The Memory Keeper's Daughter
Made: 2008
Genre: Drama
Stars: Dermot Mulroney, Gretchen Mol, Emily Watson
Premieres Saturday, April 12 at 9 pm et/pt on the Lifetime Channel

The birth of a child should be the happiest moment in a couple’s life. But when a doctor’s wife has twins, one of whom has Down syndrome, this physician makes the difficult decision to send one of his babies away. An attending nurse discovers his plan and intervenes, putting into motion events that will haunt the doc, his wife and his son for the next 20 years. This all-star movie features Dermot Mulroney (“The Wedding Date”), Gretchen Moll (“3:10 to Yuma”) and two-time Oscar nominee Emily Watson (“Angela’s Ashes”). Based on The New York Times best-selling novel, Memory Keeper's Daughter by Kim Edwards.

Proceed with caution, not for weak stomachs!

If you're checking back for results, still don't have them. You'll be the first to know though, I'm so anxious I hardly slept last night and had to take a little nap this morning while a volunteer played with Chelsea! At least she got good sleep last night!

First here's the cutest toosh ever!!!


Here's the cutest toosh ever with iodine!


Yep, that's a big old needle (more like a manual drill they drive into her hip bone)


And her bone marrow is ... RED! And it always has been. We did see the flakes of bone like someone suggested though. That was neat to see.


And the winner is...Karla!!! (Actually Becky had the right answer first, but you deleted your comment!) Well I know Karla will enjoy her prize ... a big ol wet slobbery kiss from Chelsea! (to be claimed upon the completion of round 5 ;)

Wednesday, March 12, 2008

Pop Quiz

On a lighter note...I thought I'd give my blog readers a little pop quiz...

What color is bone marrow?

The first one to comment with the correct answer wins a prize!

And yes, I took pictures of the procedure today (you know me, always taking pictures!) Just wait until you see the answer for yourself!

No Answers Yet

Wow, it's been a long day. We have lots to talk about. When we arrived in clinic today, the doctor thought Chelsea looked great and would do fine with the bone marrow test and starting chemo. Her cold has subsided and she hardly has a runny nose now, so we had no reason to postpone. Her counts were great, her ANC was 2,120, and it only needed to be 1,000 to start chemo again.

The first order of business was her bone marrow aspiration. While she was sedated, she was still slightly awake and her eyes are open during the entire procedure. They only sedate her enough to make her comfortable. The attending said that they were able to get a good sample and she showed me little flakes floating around in the sample of bone marrow. They were either bone or fat, but either way, it meant they have a good sample. They wanted to get the results ASAP because we can't start chemo until we're positive she's still in remission. The doctors have all assured us there is no reason to think she's relapsed, but that this bone marrow aspiration is part of the study we are participating in. Nonetheless we need to be certain the chemo is working before starting round five. If she by chance has relapsed, we will pull her from the study and try to figure out a different route to take with her treatment. Our doctor was in touch with the pathologist this afternoon and he agreed to look at her marrow before he left and try to make a determination.

Here's the part that makes me nervous. The pathologist was unable to confirm her remission. Does that mean she has relapsed? Probably not says the doctor and our nurse tonight. Does mama feel uneasy about it? Oh yes! Our nurse tonight explained that it usually takes a day, and if they are by chance able to get results sooner, that's just an added bonus. So I guess no bonus for us tonight. From a mother's perspective, when they tell me that they can't definitively say she's in remission, my thoughts immediately wander to the opposite side of the spectrum. Wouldn't you think the same way? If she's not clearly in remission, then that means it's back. I know that's really not how it works, that's just how my mind tends to wander.

So for now we sit here and wait. They admitted us and we're back to our second home, 4 Henson. We hope to have the results by 11am tomorrow and then we will be able to start round 5. They will have another pathologist go over it in the morning and they will run her bone marrow on a machine over night and hopefully will have more certain answers soon. Until then, I pray for her remission, and yes, I cry a little bit too. Sometimes fear gets the best of us.

I will update as soon as we get results tomorrow.

Tuesday, March 11, 2008

Cuteness

Is this the cutest little boy ever?!!! I love this kid!



And she's pretty cute too!


We're scheduled to go back to the hospital tomorrow. They've got her scheduled for a bone marrow biopsy and admit for chemo. This SUCKS! I'm so bummed. The weather is just getting nice, I can't believe they're going to lock us up again. They did say they would look her over before starting anything though and I will make sure they do. I'm nervous about starting anything or sedating her for the biopsy while she's sick. I'll update from the hospital! I guess I need to get some packing done.

Monday, March 10, 2008

Tongue Tricks

If I had a dollar for everytime I heard about how cute Chelsea's tongue is!!!!!!!!!! I'd be a millionaire. For those of you who don't know, it's pretty common for kiddos w/ Down syndrome to spend a lot of time with their tongue out. Theory has it that because they have low muscle tone, it takes less work for their mouth muscles to leave the mouth in an open position with the tongue hanging out. Well Chelsea does a little more than just leave her tongue hanging out. Her tongue has become a genuine circus act. This kid can curl it, fold it and pick her nose with it. It's the craziest thing I've ever seen. To tell you the honest truth, I believe all of her tongue maneuvers take more muscle work than simply closing her mouth and keeping her tongue in. We're working on this. You might think it's so cute now and we should just go with it, but honestly, at 35 years old, the tongue hanging out past her chin won't be so cute. So next time you get ready to tell me how cute her tongue is hanging out, think about what you're saying first.

Photobucket

Tomorrow I will post the best picture I have ever taken of Logan. It's an amazing photo. Pure luck, but amazing nonetheless.

Good night!