Life is wonderful and difficult... and I am grateful!

Tuesday, May 29, 2012

Numbers, Numbers

This morning it was Kate's turn to get blood drawn. Quite a different thing from Lab trips with Liz....
Kate has cried for days about not wanting to go and the tears started again this morning. She has such a fear of needles and blood and I am sure she has issues that come from watching her sister go through so much. I am proud of her for getting it done.
I would appreciate prayer for Kate. You may remember that in January, she had abnormal labs that actually looked like Liz's. She was even admitted and then referred to Hem/Onc for follow up. Two weeks after abnormal labs, her blood work looked good and we were grateful and just moved on.
For the past four-five weeks, she's had some awful bruising and it has made me a bit nervous. I mentioned it to the pediatrician during one of Lizzie's visits, and she wants to check Kate's counts. Kate was sick with a sinus infection a few weeks ago, and infection can lower platelet counts, so I have been waiting to get labs until she was better because I want the truest read of her labs.
Though the bruising makes me nervous, I know that Kate is throwing her body around during practice three days a week and that could very well be the cause. Still, it echos in my mind that the doctors have all said that if Kate was going to present like Liz, it should happen around this time. They are identical twins, but Walter and I have elected not to "chase" anything with Kate; meaning, we have chosen not to go looking for issues with her through testing.
Anyway, prayer is appreciated please.

Speaking of blood work...... Liz had her home nurse come today to do PICC line care and draw blood, but I put a stop to the blood draw. Her Pediatrician thinks that we can wait until June 12 to get more labs, and I agree. Taking so much blood each week is a bit much and she's anemic for goodness sake- she doesn't need blood taken away anymore than is absolutely necessary. Plus, she is going to the Hem/Onc today, and they will do a finger stick for basic blood counts, so we'll know those numbers.
I was proud of myself for speaking up and saying "NO MORE BLOOD!" : )
Liz was weighed today and she has lost more weight. Boo!
 Gosh, so much talk about numbers around here! Numbers of cells, number in weight, number in blood counts. Numbers, numbers! Speaking of numbers- we give her HANDSOME home nurse that visited today a perfect 10! Wowza, he was cute!

Monday, May 28, 2012


I have felt so happy this weekend. I could list many reasons why, but for the most part it is because I
had days surrounded by friends, Liz has felt pretty good this weekend, and my heart is full from watching my kids play, play, play for three days straight.
First, my Allison was in town! She had the nerve to move away from me, and it always makes me happy when she is here. Friday night I went out with her and another sweet friend, and we stayed sitting at our table - laughing and talking- until close to midnight as the employees cleaned around us. Midnight, y'all....that is crazy late for this momma!
Saturday, we spent the afternoon at the park while celebrating a first birthday for baby Joel and
spending time with our precious Hyatts, in town for the weekend. The kids ran and played blistfully with their friends.
Sunday was our church picnic and we spent SIX hours at the park.
 I LOVE that we have such special family friends to spend time with and who care about each other so very much. Isn't it great to watch our kids grow up together?!
It doesn't take much to make me happy.
Simple days spent with special people is sometimes all it takes.

Bless his heart- Jackson "played" frisbee football with the big guys. He only touched that frisbee twice in thirty minutes, but he didn't quit. He huddled, waved his arms, cheered and ran, just trying to fit in as one of the guys.

Beautiful Kate and Harper

Look at Lulu's face!! She was in so many rounds of that cake walk, determined to win a treat.

.......and it paid off!

Kenzie won, too!!

Ben and Jack are buddies. Jackson could not believe there was a "game" that rewarded you in cake!

THIS made me VERY happy!! Miss Liz ate this ALL BY HERSELF.
She is trying so hard.

The boys invited Kate and Liz to play kickball. Let's just say that Kate's five years of playing at recess,
many times the only girl playing with the boys, has paid off. If it was an Olympic sport, Kate would represent the US. She's awesome.

Ty Smith was so wonderful with the kids. Jackson was the pitcher.

Liz had great kicks, too. Fixing her hair before each kick helped, I'm sure ; )

I LOVED this moment, and I am saving this picture for when I need confirmation that the girls love and support each other.
As their teams were switching "up's" (they were on opposite teams), the girls passed each other. Kate put out her hand to low-five Liz, after Liz had a good kick. I seriously had tears. Kate has no idea how much Liz admires her athletic ability, and to get a "good game" from her, was awesome.

Wednesday, May 23, 2012

Helpless at times, Hopeless never....

{First, I must thank those who knew about Liz's arm and prayed. That swelling and hot, spreading red mess turned out to be Cellulitis. After a few days using a topical antibiotic, her arm started getting better and the infection now looks to be gone. Phew!}

Yesterday Liz and I went to her therapy appointment. While there, her therapist asked her how she feels when she hears that her counts (blood counts) are down or bad.
Liz responded with "I really don't care".
Ms. Jennifer then pressed her a bit to elaborate. Again, Liz shrugged her shoulders and said
"I just let my mom worry about that stuff and she will tell me if I have to have more tests or medicine or whatever. Or sometimes she will tell me if my blood is having a really good week."

She was so passive and two things struck me. One, I really believe that she doesn't care. In some ways, she has gotten so used to just being told what is or isn't going to happen, and though she may object (whoa, how she objects at times!), she just doesn't care what her labs, scopes, slides or anything else looks like.
Two, I was struck again at how much she must trust me. She knows that I will take care of all of the details for her and make the decisions, and so she let's me "worry about that stuff."

This week I have had lots of thoughts about Elizabeth, actually. More than the usual worry or medical details of it all.
While I was in the car alone (a true rarity!), I was listening to a radio station. One of the dj's was speaking about how she'd received a call from her babysitter letting her know that her young son had a horrible rash. This DJ was 50 miles from home and expressed how worried she was. Her DJ counterpart chimed in, saying "The worst thing is feeling helpless; either not  knowing what is wrong with your child, or not being able to help your child."
Hearing that hit me hard. I could not help the tears or the crushing feeling in my chest.
I have uttered those same words so, so many times, but for some reason hearing it that day hit me.
Helpless is exactly how I feel. I don't know exactly how to help Elizabeth, and I am relying on many people to help her, but even they cannot make her totally well (yet!) and that crushes me.
I feel I am letting her down over and over again, as each day, month, infection, procedure, and year passes.

For the last three weeks, I have been praying hard for my girl's heart. I know she must feel helpless at times in her own way, and it has been on my heart to pray that her feelings of helplessness, frustration, fatigue, anger, sadness, etc, does not turn to hopelessness.
That is a hard thing not to do!
I refuse to let myself become hopeless, first because I will never give up on my girl. and second because I know that my relationship with my God won't allow me to do so. I pray though that Liz can remain strong in hoping and knowing that she will get better.
This is but a Season....a long, long, difficult, yucky, miserable, somehow-wonderful at times, agonizing season for her. Seasons change and so will her illness.
Remember this photo from over a year ago?
Liz had to write a sentence on the back of her desk name tag. Her choice....
Never lose HOPE!

Thursday, May 17, 2012


It has been a while since my last post because of two reasons:
First, I was waiting for fantastic news to share with everyone.....but that didn't come.

Second, I have not felt as though I have much to share and I have absolutely not felt inspired to write.
Tonight is no different, but because we need prayers to continue for our Liz, I will share an update at least......

Elizabeth  has had a rough week. She is sick with the cold/cough/congestion that the rest of us have had, and her bug is making us all nervous as we hope and pray that she can remain free of it turning into a sinus infection or pneumonia as is common for her. We are maxed-out on preventative meds and measures for keeping it from turning into infection, so all we can do is keep up with those and pray for the best.
Friday, I took her to the doctor late in the afternoon because for two days she had symptoms of a UTI. Her urine was clean for infection (thankful!!), but it showed ketones (she was dehydrated enough to have ketones...not good!) and also showed that she continues to spill protein into her urine. This has been going on for months, and so GI thinks we should see Nephrology to check her kidneys again.

Tuesday of this week Walter, Liz and I had an appointment with her Pediatrician that lasted an hour an a half. Dr. Lee is amazing at going over things with us and she had a heart-to-heart with Liz about a few things....including a very real threat to send her to the hospital because of her dehydration.
At that appointment, we knew Liz would get the Pneumovax vaccine (pneumonia vaccine). It is super complicated, but there are different sterotypes of antibodies (I think this is how to word it.) and Liz did not show antibodies to the vaccine given before called Prevnar. We had to wait until two months after stopping IVIg to give her the Pneumovax, and Tuesday was exactly two months. All of her doctors wanted her to have it so badly, that three specialists had their offices holding a vial for Liz, just to make sure she had it on the 15th.
Dr. Lee then told me that Liz should have the whooping cough vaccine on Tuesday as well. I questioned her because I was worried that Liz was already sick and I didn't want to give her too many things. She assured me that we should do it, so we did.
By 11:00pm Tuesday night, Liz had a fever of 102 and was miserable with a headache and nausea.
That continued through the night and into Wednesday, and by midmorning Wednesday, she was making me nervous with how lethargic she was and I could not get the fever to go down at all with Tylenol. I know children can react to vaccines, though Liz never has, and so I attributed the fever and other things to that instead of taking her to the ER, thinking it may be a PICC line infection.
I was sick to my stomach thinking that I agreed to the tdap vaccine and now she is suffering.
Turns out that she is actually reacting to the Pneumovax vaccine.
This severe reaction is awful, but Dr. Lee said that the good news is that her body is reacting at all, and we can surmise that her body does have antibodies to fight that viurs...a good thing.
Still, it is worrisome that she is so sick from it, and so we will see Dr. Lee tomorrow morning.
And, because I am Mother of the Year, I told my Liz to "hush please, you have been through much worse than a shot, it is normal to have some pain!" when she complained about the horrible pain yesterday.....

Clearly this swelling is not normal. I feel awful. Her arm is 2 inches than the other one and this is a bad picture, but it is deep red and hot to the touch : (
I can't believe I asked her to not complain.

Today we added to her misery by going to her scheduled GI appointment. Some good news (because we LOVE good news)- her scope shows that her Fundo is intact. This is very good to hear. If I had to send her back to surgery again right now for a 6th Fundoplication, I think I would lose it.
Not so good news- her weight is down. If she loses even a half-pound more in the next four weeks, we are placing the G-tube. What this means is....we are placing the G-tube. I never say never, but realistically, there is no way she can maintain this weight given that she has already lost. I can appreciate that her GI doc said that a Gtube is a major lifestyle change and so we want to be absolutely sure we've exhausted all chances of letting her body prove itself. And, we want Liz to know that we respect her efforts to try at gaining. If she was crashing in weight, of course our hands would be forced to do something now, but though she is losing and her prealbumin continues to decline, she is stable. Having said that, Dr. T. explained again to Liz that needing the tube is in no way proving failure on her part. There are reasons she has trouble with her weight not the least of which is the size of her stomach. A Fundoplication requires literally wrapping the top of the stomach around the bottom of the esophagus. You can picture that each of the five times the surgery has been done (after her Fundo knot has slipped undone), more and more of the stomach has been pulled into that knot.
Walter expressed passionately that he wants to wait until after our trip to Maine the first week of July, to have the surgery for Gtube placement. We want her to be "normal" (no tube feedings) and to be able to swim and play in the ocean during those ten days. So, that is our goal.

As for the PICC line which I thought may be taken out this week, it is not. She'll have it at least another month. Boo! I want that thing out of her because it is an infection risk and infection is the worst thing that could happen for Liz. At least we know that it will be out by July 1st..... Dr. T and the team said she cannot travel out of state with a PICC line, so he has agreed to get it out by July. Yay!

I wish I had it in me to express everything I would like, but I do not.
We need prayers to continue, for the obvious concerns and sufferings of our girl, but also for her precious state of mind. I am so worried that as we run in circles putting out fires, she is going to give up. She is strong and not a quitter, but she is tired of working hard and not having a firm plan towards.getting well. One day at a time, Liz. One day at a time.

"Be strong and courageous. Do not be afraid, do not be discouraged, for the Lord your God is with you"

Thursday, May 10, 2012


Again I come to you asking for prayer. Again, I am sure that many will echo the sentiments of others and ask "why can't they figure this out?" Again, I have prayed for and expected to get a phone call with all great news from Elizabeth's doctor. Again, my stomach dropped this afternoon when I heard Dr. Lee's tone as she started to talk. Again, it feels like Liz needs to catch a break.
This morning I called the GI nurse to ask for Liz's lab results from Tuesday. It was odd that she would not give them to me and especially strange that when I asked her to just fax the rests to the Pediatrician, the nurse said "Dr. T will get those to her Ped. after he talks to you tomorrow."
Well, that doesn't work for me! I called Liz's Pediatrician and that lion of a woman didn't accept waiting until tomorrow either so she looked up the labs herself and then called me.
"I know why the GI nurse didn't want you to know the results until Dr. T was back on the office (to see them)"
Liz's Prealbumin-a critical protein indicator used to assess health and nutrition- is the lowest it has ever been. So, so very upsetting. Her Prealbumin number, along with her weight, is why she was hospitalized for three weeks in March and diagnosed with severe failure to thrive. Given the fact that she lost 2 pounds last week and now her Prealbumin is so low, it feels like we are moving backwards. Again.

Tuesday, May 8, 2012

Update in photos

Kate had Picture Day for her Club team. I snuck a shot with my phone camera. Heart racing over how old my baby is!!
Thursday was Liz's endoscopy, bravo chip placement and colonoscopy with biopsies.
She was in a good mood while she received IV fluids to treat her dehydration before her procedures.
She did great and her bleeding and pain afterwards was not as bad as some other times, so we
were super happy about that!

This weekend, an event was held locally for a fellow patient. Meg registered as a bone marrow
donor!! A few of Liz's hospital nurses were volunteering at the event and she liked seeing them
out in the real world. Halfway through our time there, her Infectious Disease doctor stopped
his beach clothes and Liz thought it was so cool to see him like that. He thought she was pretty cool, too-
looking good and enjoying the day outside!
Mitchell IS a fighter, and so is his brother. Spencer and Mitch's mom has been a dear friend of the Ramsey
family since we were kids, and now we have a connection through the hospital. Liz likes being around the boys because
the three of them have many of the same doctors and treatments, and they all are so real and even silly about the yucky, hard things they go through. Pretty sure those three could get kicked out of the joint for being naughty if they were ever inpatient at the same time! : ) Both Mitchell and Spencer have Cystic Fibrosis and are amazing boys.....I wouldn't mind if one of them married a Noel girl ; ) To say that we love the Russo family is an understatement.

Liz and Mitchell with strong, fighting, inspiring Collin.
This afternoon, our amazing kids accompanied their moms (Nicolle, Julie and me) to a meeting with the CMO
of Miller Children's. Super proud of the kids, as they sat in a conference room and gave important
feedback and opinions about the new "Medical Village" our hospital is building.
I try so hard to teach Liz that we have to turn negatives into positives, and we must give back and serve whenever possible.
Our experiences of a difficult medical life is not what we would ever have chosen, but we can use this to make things better
for others. Today, we did that; today these kiddos did that!

{ And an update on our girl- She was weighed today, and she's lost two pounds. Boo.
She is sick with the same cold/virus that Kate had.....not good. Eleven days into being sick, I took Kate to the doctor yesterday and she was diagnosed with a sinus infection. Liz CANNOT have her bug turn into that. Hopefully her
prophylactic inhaled antibiotic will keep that from happening. The pediatrician hung her head and sighed at knowing Liz is sick, too. I reminded her that I can't bubble wrap Liz around her siblings!
Liz needs to have the Pneumovax vaccine on Monday- all specialties are freaking out about this. That vaccine is ordered in small amounts by doctor's offices because it doesn't have a long shelf life. Liz needs this so bad, and had to wait for two months after stopping IVIG to get it- there are three offices holding one for her just to make sure she gets it as soon as she can- which is Monday. She can't get it if she has a fever, so we pray she will be fever free.
Also next week is her GI appointment to talk about her weight and her prealbumin decline, along with discussing placing the G-Tube and taking her PICC line out. Blah.
Labs from last week show that her iron stores (different from her iron counts) are also low, and have in fact gotten lower, so
we are hoping giving her extra ferratin will help. We'll repeat that study in a few weeks too.}

Sunday, May 6, 2012


There is nothing like having a sister.
There is nothing like mothering sisters.It is both a privilege and pain to watch the relationship of daughters, and mothering identical twin girls is proving to be a huge life lesson....a beautiful, blessed lesson. How in the world I was chosen to get two at the same time to raise, I will forever
 be amazed and grateful for.

The past few years of Elizabeth's declining health has added another dimension to
raising Elizabeth and Kaitlin. Though we try hard to not let her health be a focus of our
family, it would not be truth to say that it isn't playing a role in our little world- and in the girls' relationship. Having an identical twin is forever having a mirror....and while Liz's body has failed her, she is able to see Kate growing taller, bigger, stronger.Kate spends her days in school with friends, while Liz spends days at the hospital.Kate doesn't need help taking a shower. Kate doesn't need medications or treatments to keep her well. Kate can go to a sleepover with friends without having to worry about bringing an iv pole or meds, or what food will be served, or if she will get sick in the
middle of the night. Kate has freedom. And still, I am sure that all of those things really don't factor in much when Kaitilin thinks of the attention, stress and worry that her sister's issues bring to our family-much bigger issues than the normal, usual things that sisters usually deal with.

 My heart breaks sometimes when I see how the girls can hurt each other. Sisters can be so mean to one another and their tongues can cut like knives. As a mom, it can be brutal to witness.
Having a sister of my own, I know that though they hurt much, they love more.....
I know this by the way they will push their beds together some nights, just to be close. I know this by the way they giggle over secrets and whisper things only they understand. I see how much they love each other when they have a conversation by just looking at one another across the dinner table, or when they walk shoulder to shoulder in the way they have since they could stand- a sure sign of their twinship. I hear how much they love when they speak and dream of their futures and how they plan to always live near each other. I know how deeply they love when I see one literally ache for the other and she reaches out to her sister .
And yesterday,  I saw love ......
Liz was too tired from an hour of walking and I turned back to
see Kate struggling to carry her sister. Kaitlin carried her all the way to the car, and though she had to stop three times to hoist Liz onto her back, she kept going and I heard her say
"don't worry Liz, I am stronger than you right now."
 A sister can carry you when you aren't strong enough to walk alone. That is love,
and in my last breath, I will take comfort in knowing my girls have their sister.

Wednesday, May 2, 2012

Liz's labs, drawn Monday, aren't so great. Her Prealbumin is back down, she is anemic, her white count is low, and just as I suspected- she is dehydrated. Tomorrow we'll spend the day at the hospital. She'll get IV fluids to help with the dehydration and she will head to the procedure room in the OR for an endoscopy, bravo chip placement and colonoscopy. Earlier we were told she'd just have a sigmoidoscopy, but given her anemia and symptoms, the team would like to do the full colonoscopy.... which has meant having to do the prep. Poor Liz has had to go through the clean-out prep so many times, and it is hard to make her do it again. She got a super cute beach bag in return, and that helped ease her reluctance a bit ;) She is just so amazing with all she endures- over and over and over again. Please pray for our girl's tolerance tomorrow. Also, in the past she has had a rough time after colonoscopies. We are praying she won't have the awful pain she's had before. In March, she actually did well with it and we are hoping for tomorrow to be the same. Thank you.