Prayer request

Please pray for Elizabeth. Her cough has gone from bad to much worse, with wheezing, fever and chest pain accompyning it. After a trip to the doctor this morning and then the hospital for xrays this afternoon, we are waiting to hear if she again has pneumonia. That in itself is bad, but knowing how her CDiff flares while she's on antibiotics, we are praying it is not pneumonia. She was given a large dose of steroids in the pediatrician's office and will continue on the steroids for five days. We should see a positive difference by tomorrow.
Thank you

Good for the heart

Elizabeth has a friend over today!! This is the first time in many months that she's had someone over to play, as schedules and illness haven't permitted. Actually, Liz has an awful cough today and was up most of the night with a fever, but she was dead set on having this play date and I think it is super important for her to have this time of fun. Girlfriend time is good for the heart. My sister and her husband took Jackson and Kate to Pretend City, so Liz and her girlfriend have had freedom and quiet.... a perfect setting to make their own noise and chaos in.



Little fashion girls. They have decided to make the girls' bathroom into a fashion studio. A piece of plywood over the jet tub (that is never used anyway) makes for a perfect table and the mannequins have found a new home. Liz's friend is a cutie, but for her privacy, I won't show her face.






Silly string for silly girls.






{Total happiness}

Yahoo!

Yahoo!!! Today Kate had her counts drawn at her Hematology appointment. As we arrived, the nurse asked me to fill out a history sheet for Kate's new patient file. I smiled and told her that I would do it out of protocol, but I knew this would be Kate's one and only visit to the office.... my official unofficial call.
Kate's numbers look fantastic! The doctor agrees with my thinking (alright, I should probably phrase it that I agree with the professionals opinion)- that a virus hit her body super hard and caused her counts to crash last week. We won't test her again until July. Such a great thing to see counts that look so great! Grateful!!

Now for a few things I am following and I think you may want to follow, too:

The Taylor's are getting close to the Run for Ruby - to be held on the morning of January 7th in Rancho Santa Margarita. Please check out the site or blog to learn about this amazing family and all Ruby's life has inspired. If you don't want to run (though I know many of you who are runners and would love to do something to benefit the Ruby Foundation while running a beautiful course), you may want to go to donate blood with the Red Cross or register with Be the Match...or maybe just to enjoy the morning.

Go here for more information:
http://www.rubyjanefoundation.org/run-for-ruby/


My friend Jen left two days ago for....wait for it... 10 months of traveling around the world! Say whaaaattt?! I am so envious. If I was not a married mom, I would either be a business woman traveling this world (the whole reason I studied my now useless Japanese in the first place) or a back-up dancer for some pop star, bouncing from place to place (never mind the fact that I have no coordination, caused by what I have shared before.... Travis Ramsey. Had he not been born and pushed my parent's budget or time management, I would never have been pulled from my five year old ballet and tap classes and I would be an amazing dancer, I'm sure! I am not bitter at all:)
This PTA mama, who is drowning in carpool and throw up, is so excited because I am totally going to live through Jen. You can too because she has a website and will be keeping a journal of all of her adventures (shenanigans) throughout her journey.
She is full of energy, totally brave, ready to throw caution to the wind, going places many of us dream of visiting, is a petite little thing with the food tolerance of caveman meets Bourdain, loves wine, and is only taking one pack with her for the year... how can you not want to follow her?!

Here is an article about Jen with a link to her site:
http://www.gazettes.com/lifestyle/resident-leaves-life-to-travel-world/article_d4045e44-2cd4-11e1-9dee-001871e3ce6c.html

Blue

I'm living a yo-yo life, it seems. An uncertain, unknown, unplanned life. And you know what, I am having to learn that some things are the way they are and words just can't explain....but I am kicking and screaming inside during this life lesson.

Today we had an appointment with the Immunologist/Pulmonologist/ Fix-my-kid-please-ologist. A huge praise to report is that Elizabeth does not have full blown, active CGD. I am so, so thankful for this and seriously let out a sigh when the doctor shared this. He does believe she is a carrier and so when she decides to have children, she will need to go through genetics testing and counseling. That is a bridge Liz will have to cross when she gets there. For now- joy, joy, joy!

We talked about how she has been since her IVIG treatment two weeks ago and he reiterated how it will take time for her body to adjust to the infusions and for treatment to work the best it can for her. He also said that her headaches and fevers are probably from the IVIG. We will move her treatments closer together (ugh!) after her next two are done. We'll have an idea of the effect it may be having on her after her blood is tested on the 13th, right before her next infusion is administered.

Dr. Brilliant had spoken with Liz's Hem/Onc doctor (one of the greatest men in the world!) and they are concerned about her bone marrow. I have said how her last bone marrow aspiration shows that her marrow is still hypocellular. This last marrow sample also shows that her B cells are abnormal... which is not good. There is no malignancy, which is "odd" (umm, more like a huge gift, I felt like saying!!), but her B cells are defected; they are failing to mature or reproduce properly. B cells are lymphocytes that play a huge role in a body's antibodies/immune responses, so the findings go right along with her other lab work and her symptoms. Now the docs need to find out why her Bcells are like this. We will see her Hem/Onc doctor tomorrow morning to talk more and to discuss additional therapies. Kaitlin also has an appointment at the same office tomorrow to check her counts because of how low they all were last week. Please pray with us that those labs were simply in reaction to a virus, and not indicative of anything Liz is going through. I am certain she is fine.

Liz has lost weight this past month which was discouraging. Dr. Brilliant was also little concerned with her ability to open up her lungs, so has advised us to start moving her more. More? She runs around like a crazy person, playing with her brother and sister, but alright, we will do more.


As I write, I have a sick Elizabeth in my bed. She has a cough and congestion and her chest hurts. Add in her tummy pain and she is kind of a mess. If I am honest, I will admit that I feel a bit of anger. Though I stroke her head and try to soothe her, I do so with a mindset of complete fatigue and (ugh!) admittedly, a teeny bit of annoyance. I am so tired of sick I could just scream. Really, I could. That sounds awful, but it is the truth. I literally have to pause and remind myself that if we weren't in this situation, I know I wouldn't feel so...ambivalent at times. I remember a friend who had a sick child telling me how she felt ambivalent sometimes about her child feeling sick. I could not understand, no matter how hard I tried, how a mother could say that. I didn't judge her because I wasn't in her position and I was certain she meant another word than she had chosen to describe her feeling - or not feeling. Now I know she knew exactly the word she was using. If you know me, you know that I am so very caring and compassionate with my Liz. I have held her as she retches, rubbed her back, massaged her body, bathed her, spoon fed her, sung her to sleep, encouraged her, held her hand, watched over her, counted her breaths, and rocked her in my arms more times than many mothers have a chance to (which in itself is actually a blessing). I have done all of those things and more. And yet, even a mother can grow tired and weary, and long for normalcy.

I don't know much, but I do know that I see things differently now than I did before.

O' Christmas tree and the flu for me!

Christmas Eve pajamas. My goodness, how old do they look!





The most fake smile ever, but it shows off his "All I want for Christmas are my FIVE front teeth!" smile. Jackson's Christmas Eve pajamas are CK pants and a white tee, just like Daddy wears to bed.







The girls' faces as they saw what was hiding behind the Christmas tree......





....bikes! Kate's cool blue and green beach cruiser. Liz's pink and white beach cruiser with scrolled "Lulu" (her nickname) written on it. And a green and black bike for Jax. So fun.




And that is it for photos, because immediately after I took the first bike photo, I got super sick and spent all of Christmas day and night in bed with a horrible flu. I was too sick to be overly sad that I was missing out on the day. It was just that bad! In fact, two days later, I still feel pretty gross, so I am just going to count it as a start to my New Year diet, and go with it.
Elizabeth says it was her best Christmas ever - forget the fact that her mommy wasn't present at all!- and that is what matters; I am glad that she and Kate had a great day. Poor Jackson wouldn't even move to open presents and was pretty miserable with what we now know is a sinus infection. Boo for us! Next year we get a big, big do-over Jackson!

I hope you all had a wonderful, healthy Christmas!!

Phew!

Phew, it has been a rough week. First with Kate's sudden illness and hospitalization and then with Jackson being sick. After getting through all of that, I was so happy Wednesday to finish all my wrapping and cleaning in anticipation of relaxing and just enjoying the few days before Christmas. Man, this year has taught me- and keeps reminding me- that I can plan all I want, but things may not go as I would like. Yesterday Walter woke up pretty sick with the stomach flu and just as I was heading out the door to take Elizabeth to the hospital for her long morning of studies, Jackson came to me vomiting. ugh! Poor Walter, I had to throw Jack in bed with him and rush off. Guilt!
Today Walter is better and Jackson is the best he has been all week. I think he was just sick to his stomach because of all of the mucous and coughing. Poor kiddo has missed a week of school and has been asking for his buddies. The natives are growing restless being under the same roof for so many days while feeling sick.
Kate went back to school yesterday (if only to escape the yuck happening here) and even played in her first scrimmage last night for her club volleyball team. I hated letting her play, but she insisted on not missing it as she said she didn't want to have her coach think she wasn't tough. Sweet girl; she wouldn't even tell him she'd been so sick. When he commented on how pale she was, she said nothing. Hard core!

During the night Liz woke with a bad headache and this morning had a fever and dizziness when she would stand up from sitting. I reminded myself that we have had plenty of illness in the house this week and so it is possible that she is just fighting off a virus. When her counts get low and the doctors warn to bring her in if she gets a fever, I have to use my judgement or we would be in all the time!
It was very sad though when she told me that she doesn't care about Christmad because she feels sick. I am praying that she gets some sleep tonight and wakes feeling much better in the morning, because she is NOT spending Christmas in the hospital or in bed. She just isn't.




Yesterday Liz had a gastric emptying study in Nuclear Medicine. After our rough week and the chaos of the morning, I started to cry as I sat at the light waiting to enter the hospital. 80% of the hospital nurses started a strike yesterday and they were making it difficult for cars to enter the lot. My frustration just reached a limit and I couldn't stop my tears. I cannot speak to their issues, as I am not a nurse there, but as I watched only one car per long light be able to get into the hospital, I wanted to yell out to them "Do you think we want to be here? Have you even thought that perhaps one of these cars holds the family of someone who is dying in there and they have been called to rush to the hospital, but now must wait and wait at this light?! Get in there and take care of the patients!"
Anyway, we finally made it inside and though the test takes a few hours, it was uneventful. Liz was patient through it all and I was grateful for that.



Looking forward to a wonderful weekend. For those coming over tomorrow night, know that the house has been bleached, sanitized and laundered. We have no more germs to spread and we are looking forward to a home full of extra fun and love (and maybe even a Wii dance off :)

Home Again, Home Again

Kaitlin is home from the hospital! She is feeling better than she was over the weekend and is resting as she is tired. Her asthma is acting up a bit and she has a cough, but overall feels pretty good. Everyone slept well last night and that alone was a blessing. At one point over the weekend, I had been up for 41 hours straight and when a nurse commented on it, I told her how I had been in training for years with all of Liz's hospital stays. Still, sleep is so good and I needed it last night!
We decided to surprise the other two by walking in the door without having told them Kate was being discharged. Liz ran to me and cried and cried as I held her. I think that she had such a mix of emotions over worrying about her sister and missing me.

We'll watch Kate for fever or petechiae, just as we do with Liz, and she will have labs drawn again later this week. She will be seen by the Hem/Onc doctor on Tuesday when we go for Elizabeth's appointment. When the Hem/Onc doctor saw Kate yesterday in the hospital, she said we will just take things slowly and hold onto the fact that Kate could have been hit by a weird virus and her body reacted with becoming suppressed. I feel my stomach drop when I think of that because it is exactly what we were told about Elizabeth two years ago. Still, it is a real possibility and I remain hopeful that it will be the case for our Kate.

Jackson has a bad cold and cough and has been home from school the last two days. Our home is full of irritable people, but we are happy to at least not be in the hospital.
Ironically, Liz is doing great! With her immune system so compromised right now, and the way her colds turn into pneumonia or sinus infections that require a dreaded antibiotic, which in turn causes her Cdifficile to flare, I am fearing she will get Jackson's cold. If she can stay healthy through this, I will be ecstatic!

Liz has a gastric emptying study on Thursday in Nuclear Medicine at the hospital. Our hospital's nurses are going on strike that day and I hope it won't cause for a delay while we are there. She has only this test before Christmas and then won't have to go back for appointments or treatment until the 27th. Some days I feel as if I have a continous list in my mind where I check-off one trip to the hospital after another.

Christmas Eve I have the tradition (with Meg and Trav) of delivering meals with a group of volunteers to families who have children who are inpatient. Though we have spent a few holidays in the hospital - Easter and 4th of July this year alone- we have been so fortunate to not be in on Christmas. The group gathers at the hospital kitchen and picks up huge food carts full of meals which we deliver to each pediatric, PICU and NICU room. We also deliver a gingerbread house so that the family has the fun of that. It is a joy to be able to bring a tiny bit of cheer to the families who are there for Christmas.

Thank you for continuing to pray for our family.