Update

This is Elizabeth's new toy. At least, I wish she would think of it that way because maybe then she would not fight me every time she has to use it....which is three times a day. Indefinitely. That's a whole lot of fighting.
Advances in medicine really is an amazing thing and this little nasal nebulizer is pretty cool. It is used for inhaled antibiotics- a form of medicating that isn't common, but is starting to be used a bit more. An antibiotic's molecules are broken down and made into a liquid that is put into a chamber and then mists out. Exactly like an nebulizer that is used for breathing treatments, except this one is used to inhale the mist (medication) through the nose. It is being used for Liz to prevent her from getting sinus infections. Remember, she is on the cycle of being immune compromised, getting infections, needing antibiotics to get rid of the infection, and the antibiotics causing the CDifficile to rage. using inhaled antibiotics will help keep her from getting the sinus infections that she is prone to getting every stinkin' time she has a cold or viral thing going on....which is constantly these days.
She says the process burns her nose and is painful, so that is why she fights the treatments. She has no choice, though.

We have the results of the labs done Monday, and I am relieved to report that her liver panel looks much better! Such great news.
Sadly, frustratingly, and cause for great worry, though, is the fact that her other counts look worse. Her Prealbumin is much lower and this is making her doctors very concerned. The fact that this number is even lower and that she has lost more weight makes the doctors think we need to intercede. In her GI's words- her counts and weight are concerning enough on their own, but given that she is so fragile and susceptible to infection, we don't want her getting so far behind that her body would be too tired to fight an infection. Last night when he called me, the GI said if she didn't show drastic change in the next 12-24hours, she would be admitted to have an NG tube (goes in the nose, down the throat and into the stomach) for feeds. I don't know what drastic change we could see other than her greatly increasing her intake, which she just isn't doing. I don't want to go to the hospital, I don't want another admit, and I don't want to start the cycle of using the NG for feeding. But, we may not have a choice. Other than the obvious concern over her weight, her body is showing even through her blood counts that she is malnourished and it is taking a toll.
My plan is to wait until tonight and talk to the doctor and ask if we can go in tomorrow afternoon. Katilin really wants us all at her tournament tomorrow (Walter is finally off on a weekend as he begins vacation tomorrow) and I need to help her get organized with a school project due next week. One day isn't going to make a difference.
I've told Liz we may have to go to the hospital, but life goes on and in fact, she is cleaning her room right now and working on homework. She absolutely does not know about the tube, as she would freak out (wouldn't you?!) and there is no way I would be able to get her in the car let alone into the hospital.

So that's where we are at....will update later.

Sweet!

Do you know who this is with Miss Elizabeth Claire?......

....it's sweet, sweet Jana Alayra. If you don't know who she is, I encourage you to look her up. She is an amazing woman who shares her life story and testimony with many, many groups around the world. She is also a fun, fabulous Christian singer who my kids happen to have taken to from the time they first heard her over seven years ago. Though Jana is based in the OC, she is very well known and busy with performances and appearances. The MOMS group I attend has been fortunate enough to have her share multiple times over the years. Anyway, my kids totally love Jana's music and have met her before, and I was excited to be able to have Liz with me this morning when Jana was back at my MOMS group. She was warm with Liz, and a little pep-talk, a free cd (just for being a special kid) and a big hug, had Liz a smiles.


 Know what else is sweet? A big 'ol bag full of M&M's! Know who would agree with that statement? A little guy named Jackson, who happened to be caught eating M&M's in bed at 12:40 AM (!!!!!!) this morning. Not. Even. Kidding. I heard noise on and off coming from his room for about ten minutes. First, I thought he was climbing down from his cool loft bed to go to the bathroom. Then, when I didn't hear his steps coming down the hall, I thought he was restless and maybe books or little cars left on his bed were being pushed around, causing the noise. Finally, I sent Walt in and he found little Mr. Wonka eating the candy! When Walt entered the room, Jackson looked up and said "Oh, hi". Twelve forty in the morning, friends! For goodness sake!
Sweet stuff!

I feel like dog....

The kids want a dog so badly. Liz has become obsessed with the idea and spends at least an hour each morning searching the web for the perfect dog....every day there is a new perfect one. I will admit that I fueled the fire by promising her a dog during her last hospitalization. I never should have done that. I mean, I do promise that we will get one, just not now. Not now, not next week, or the week after that. They are just so much work and, well, I am worn out from work. And, I have told many people, many times that I a convinced we will get a dog with a health issue and I can't take the idea of more money or care going towards a sick animal. That isn't going to happen you say? I can give you two very real, very sad examples of that happening to two people I know. I just can't take that right now. We will get a dog. Soon. Just not now. Until then, I will feel like a mean mommy. Exhibit one...

Are you kidding me? How sad is this? The kid has been sleeping with a balloon dog! A. Balloon. Dog. For goodness sake! Exhibit two, if only you could see, is Elizabeth's printed out photos of "Pete" and "Coco" from the animal shelter's adoption page. Ugh. Saturday we went to the cutest birthday "pawty" and we were surrounded by everything puppy. Even the darn chips were in the shape of dog bones. Juliette, I heard nothing but how mean I am and how nice of a mommy you are because you gave your child a dog party AND you have two real dogs! : ) Soon. Just not now. Speaking of dogs..... dogs poop....and I feel like poop. I finally broke down and went to the doctor, if only to get some cough syrup that would actually work. Turns out I have bronchitis/border-line walking pneumonia. Blah. How did that happen?! To top it off and to get my co-pay's worth, I also have a bladder infection. Good stuff. The doctor asked me if I have been extra tired or under any stress lately and I about laughed in her face. I didn't even go there with all I could have said; so I just said "umm, some." Finally, thank you for caring about our family and especially for praying for our Elizabeth. My blog has had over 20,300 (!!) reads, and though I feel exposed and wonder at times if I should continue to blog in the "open", I appreciate that there may have been 20,000 prayers for my family.

Very short post tonight as I am feeling pretty sick myself with what I think may be bronchitis. I am just hoping coughing non-stop is burning some serious calories. Liz's cold isn't getting any worse and I pray this is a sign that the treatment is working! This afternoon, though she started soiling and has had some intense tummy pain. This is characteristic of CDiff, and I can't bear to think that it could be back. So, I am going to pray and know that tomorrow is a new day.

Elizabeth's Choice...

Elizabeth Claire made my heart stop this morning.
We were walking from the car to Jackson's classroom for pick-up and she stopped me and said "I want to tell you something."
I asked her what she had to say and she answered-
"I want to be Baptized!"
My heart stopped. Out of surprise and the pureness of her request...it stopped.
When I asked her why she would like to be baptized she said....
"Because with all I have been through, I think God is trying to tell me something. I want him in my heart and I want people to know that I follow Jesus"
She went on to say that she has been thinking of it for a while and she feels it is what she needs to do.
Ironically, she has not been to church in months and months (her wonderful teachers mail home each week's lessons).

My precious girl. My sweet Elizabeth, who has been downright mean and nasty lately...sharp with her tongue and even cruel with her actions. My girl, who has made me more concerned about her emotional health over the last few weeks than even her physical health; so worried that she was losing complete trust in everyone, in prayer, and even in her Savior.

My first born, who has been through hell and who has no clear picture of an immediate end in sight to her pain and worry....
is choosing, on her own prompting, to be baptized. She does trust. She does believe. She does want to live for Him.

My heart. My Elizabeth.

So, this guy......

....is getting married in July. His gorgeous fiance, Brooke, should be in the photo I post about his wedding, but I figured I should get her permission before posting a photo of her. Since it is 4 1/2 (!!!) hours ahead of our time in Newfoundland (seriously, it's like they live in space that place is so far away!), I cannot call her, so this photo of Travis with Jax will have to do.

Anyway, my (big) baby brother is getting married in July-in Maine- and we are going, of course! Rather than make it a quick trip, we will spend nine days back East. So excited! Walter and I have been without kids, and the kids and I went without Walt, but this will be our first time as a family and I cannot wait. It will be extra sweet because our trip last summer was cancelled due to Liz's hospitalization. We're going this time, no matter what! I didn't even buy the airfare insurance- that's how serious I am about this.


Liz is sick again. Jackson and Kate have had colds (though Kate will tell you she is not sick, as she hacks away) and now Liz and I are sick (though I am saying the same as Kate :) ). When her doctor called to check in today and heard about Liz being sick again she said "oh, for goodness sake!"
Exactly what I am thinking! Alright, not exactly. If you know me well, you know I am really thinking "oh, for crap's sake!", but I am trying to do better at not using that phrase.
Anyway, Liz is sick and because of that, her liver studies and her pulmonary function test cannot be done on Monday. She was also scheduled to have a weight check tomorrow, but we'll hold off on that too as we know she hasn't gained any weight the last two days while she's been sick. I am fine with waiting a few extra days for the tests because I want results that show her true numbers, not results that are affected by a virus.
Please, please pray that her cold stays simple. If she gets a sinus infection or pneumonia (which has been her norm), she will need antibiotics, which will cause her CDifficile to come back. Same old cycle.
Anyway, we're praying hard over here for the cold to remain just a cold.
Her doctor also reminded me today that we are to follow the "101' and run" mindset with Liz until we're told otherwise. That is, if she gets a temp of 101', we are to go directly to the Pediatrician or ER. I hope the professionals know that a little rhyme only irritates a parent, and does not serve as a cute reminder.

Thank you for continuing to care about my family!

Imperfect

I posted today on facebook that I need everyone to know how impatient I am. How angry I get, how I am unfaithful in trusting Him, how I am not always positive, and how I lose my mind with impatience at times. All of the wonderful and supportive comments I get about my strength, patience and how I handle certain things is motivating and does lift me up, but I need to keep it real and make sure you all know that I am not all of those things all of the time (not even half of the time!). Really. Ask the kids, or Walter, or my poor sister who gets my crazy calls some days. I am so imperfect in how I am handling myself. I can be such a mess, actually.

Yesterday was a looooonnnnngggg day at the hospital. Liz and I were there from 10:30-5:00. Her IV fluids took forever to run and then we had a terribly long wait at the Hematology/Oncology office.
I am happy Liz got fluids yesterday as she was indeed dehydrated (as labs showed) and she came down with the cold Kate and Jackson have had, so she feels pretty crummy. I was also happy that we were able to go directly to "Day Care" (the area of the hospital where patients going through chemo, transfusions, infusions, IVIg, etc. receive treatment), so we avoided having to go to the ER and having her exposed to all the germs floating around that petri dish of an area. Also, the Day Care nurses know her well, so she is comfortable there. They also are the best at starting iv's and she has a room to herself, so it is an easier experience all around for us.
I had a good talk with the hem/onc doctor and she sincerely let me know that she understands my frustrations. In fact, as she left the room, she came back to tell me that she gets upset when there are cases that, like a puzzle, take longer to put together. So much to be said as to what was discussed, but basically, she let me know that they think Elizabeth may have something developing. They have talked about this diagnosis before as a possibility, but as I was told again yesterday, it can take months to years to develop. Elizabeth's bone marrow is abnormal, we know that, but there are certain markers in the marrow that give this definitive diagnosis, and so far, Liz's marrow hasn't presented those specific markers. The abnormalities her marrow does show, along with her abnormal cell counts point to the strong possibility that she is developing Myleodysplastic Syndrome (specifically, if this is the case, she would most likely have the RCMD category). Of course, my first question was if we could just go ahead and start treatment for this, but the answer is no. They need a definitive diagnosis and because there are different categories of MDS, we'd need to know which one she has because treatment varies. Fabulous.
Since she just had her last bone marrow aspiration in December, they are recommending we wait until May to repeat it. That seems so long to wait. We put men on the moon for crap's sake, I want it checked and ruled-out, now! The doctor reminded me that MDS can take months to years to "develop", so we need to give time in between BMA's, and also, if her marrow is going to recover, we want to give that time to happen too. After three BMA's that have shown marrow that hasn't recovered, this hopeful thinking is hard to cling to.

So, Hem/Onc is recommending we continue IVIG until April, then take 2 months off (her other docs agree with this). Testing having to do with white cells and immunology will then be done (testing that can't be done while on IVIg). Then, in May she'll have another bone marrow aspiration.
For the immediate, she'll keep up with the transfusions, start inhaled antibiotics (to prevent infections), have a pulmonary function test (because her lungs don't expand they way they would like them to) and her liver studies repeated next week (if her liver numbers are still off, then I will run away. That'll be the straw, I am telling you now). Our primary focus right now is to keep her from getting infections, and for goodness sake, to get her to gain some weight. It is crucial she not lose anymore weight.

I wish I had something profound or witty to write about tonight, but I just don't.
Working on being patient, positive and not letting my frustration get the best of me....I have a lot of work to do in those areas!

It's a good thing that in the midst of all of this, we have happiness all around....

like this little man. He is growing so tall and big, and even a bit naughty... and his sweet smile lights up a room; Jackson lights up our family.







And my Kate. How fun to be part of a team! This is their pre-game huddle and cheer......
followed by her first time serving during a tournament. Only 5 girls have served during games, and you should have seen Kate's frantic expression when the coach told her she was serving. Eeekkk! Her teammates were awesome as they immediately started cheering her on. Over the net, 3 points scored off her serves, and her first time out of the way. Phew! Have I mentioned for the 100th time how happy I am for my girl to have this sport-this team- to call all her own right now?