Good News/Bad News

Good News:

The good news is that Ella had to go in for another iron IV infusion on Friday.  Why is this good news?  Well, because while we were there we learned that in the 2 weeks she’s had her g-tube she’s gained 2.4 pounds!  When she was weighed right before her surgery on April 26^th she weighed 12 kilograms, or 26.4 pounds (see, I told you she was tiny for a 4 year old).  On Friday she weighed 13.1 kilograms, or 28.8 pounds.  We are so excited!  We knew she was getting bigger, her clothes were tighter, her arms look chunkier, her face looks chunkier, and even her legs look chunkier.  We’ve even had other people comment that she looks bigger.  This is terrific news!  Hopefully she’ll be 30 pounds by her birthday!

The other great news is that Ella’s iron is up to an 8.  I realize this means nothing to most of you.  Just know that for the average kid their iron level is around 12.  In Feb when we went to Cincinnati Ella’s iron was at a 6.5.  Yeah, half of what it should be.  We’ve been going to a local blood clinic every 2 weeks since then and she’s been getting an IV iron infusion.  Basically, instead of giving her iron supplements, she gets an IV and they put iron directly into her blood stream.  Ella calls this her “Happy Juice” because she always feels better after she gets an infusion.  Even with the iron infusions the highest we could get her iron level was up to a 7.1, and 2 weeks after that she was back down to a 6.5.  It appeared that her body was so starved for iron that the minute she got some in her blood stream, her body immediately sucked it up.  Joe and I were beyond frustrated, so when she was going in for surgery we asked the doctors to consider giving her a blood transfusion.  I can hear all of the gasps across cyberspace.  “Blood Transfusion” sounds much worse than it actually is.  No, it’s not ideal.  Yes, we wish there was something else we could have done.  But the reality was that we had been trying the iron infusions every 2 weeks for 6 weeks and they just weren’t working.  We talked to several doctors about this option and felt like this was the right next step.  The hope is that with good blood in her that already has a good level of iron, now her body can start from a higher level and work up, instead of starting from the bottom and working up.  Her iron is now at an 8, and she got another infusion on Friday, so we’re crossing our fingers for good progress.  The other added bonus is that with her new belly button I can now give her iron supplements daily without the fight of her taking them orally (which she flat refused to do, and when I would force them in her she would throw up).

2 little side notes: 1) All morning I prayed that Ella’s iron would be at an 8.  No joke, that was my specific prayer.  Guess God heard me.  2) As we were leaving the clinic Ella was the last patient for the day, so they gave her all of the balloons that were in the office.  We came home with 9 Mylar balloons!

Bad News:

The bad news is that Ella’s skin is really bad right now.  I’d say that right now approximately 75-80% of her body is open wound.  I honestly can’t remember a time when it has been this bad.  It’s heart breaking.  We aren’t sure what the reason.  We had a wound cultured while we were at the blood clinic, so it could be that infection is the cause of this horrible skin phase.  Another possibility is that she’s growing so much so quickly that her skin can’t keep up.  She’s also just getting over a cold, so somehow the cold could have caused skin breakdown.  Whatever the reason, I’m ready for this to be over.  It’s times like these where my inadequacy comes through.  I’m at a loss.  I’ve tried everything I know to do to heal her body.  I went to Whole Foods and spent $9 on a diaper rash cream that someone recommended.  I even went and bought some coconut oil and have been rubbing it on her body because someone told me it’s good for skin.  Seriously, I have no idea how to help because everything I’ve tried doesn’t work.  Please keep Ella in your prayers.  Pray for healing for her sweet body and please pray for wisdom for Joe and me to know what to do.  We are so encouraged by the progress made with her new belly button and all that it will provide, but right now we need her sweet body to heal.

Well, there you have it.  Life comes with its ups and downs.  Ella is in good spirits.  She continues to help with her new belly button and has adjusted to that beautifully.  Physically, she just takes things slow and I keep her on continual Tylenol.  She really is Xena.

Xena: Warrior Princess

My mom has decided that Ella is more than just a princess, she’s a warrior princess.  Thus, she has started calling her Xena.  It’s funny because I had a roommate in college who loved that TV show.  I thought it was ridiculous at the time, but now I wish I had paid more attention.

So we headed out to Cincinnati on April 25th.  We decided to fly there and drive back, since we didn’t know how Ella would feel after her surgery.  The flight was good and we got into town around 8:30.  We had to be at the hospital the next morning at 9:30 and surgery was scheduled for 11:00.  Unfortunately there was a hang-up somewhere and Ella didn’t get back into the OR until closer to 1:30.

I have to enter an anecdotal story about Ella because it’s something Joe and I have laughed about time and time again.  In case you didn’t know it, Ella loves food…and she has a little bit of an attitude.  Throw a lack of food in there and the attitude comes out more than ever.  So, like any procedure, Ella couldn’t have anything to eat or drink before the surgery.  She was NOT happy about this!  Finally, when we were getting ready to take her back to the OR the nurses were going to give her a little relaxing medicine.  I don’t remember the name, but it basically calms her down before going into the OR.  The big perk to taking this medicine was that she could have water afterward.  Ella was so excited!  They finally brought in the medicine, but all they let her drink was a little medicine cup of water.  Oh boy did we hear about that!  “What’s wrong with this place?  Why don’t they have big cups around here?  Where are all the big cups?”  And the list goes on.  I know it sound mean, but it was so funny.

Ok, back to the surgery, Cincinnati Childrens Hospital is great because they let both Joe and I go back into the OR with her and wait next to her bed until she goes to sleep.  It’s never easy to leave her in that room, but at least I know she wasn’t scared and upset when she went under.

The procedure took about 2 ½ hours.  Both doctors came out and talked with us and told us how things went.  It was all pretty cut and dry (which is what we had prayed for).  Luckily Ella’s tummy is pretty clear from boo boos right now, so they didn’t have to navigate those.

Ella pretty much slept all day Thursday.  She woke up in spurts, but all in all she just laid in bed and slept.  She did wake up begging for food, but unfortunately was on a liquid diet.  The chicken broth and jello didn’t really satisfy her appetite, but it was better than nothing.  The plan had been for me to stay at the hospital with Ella and Joe would go back to the hotel, then Friday night we would switch.  Ella informed us that she wanted daddy to stay at the hospital and mommy was going back to the hotel.  I didn’t argue with her…I had hardly slept the night before the surgery and was secretly looking forward to a night at the hotel to actually sleep.

The next morning Ella woke up ready to face the day…and ready to eat.  I arrived around 8:00 and met the nurse in the hall.  She informed me that Ella had already said that she was “So, so hungry!”  The doctors came by for rounds around 10 and one of the first things she asked was, “When can I eat.”  Luckily they gave her the all clear to start eating regular food.  She enjoyed some scrambled eggs and sausage.  By this time she was done with being in her jammies, so we got her in some real clothes, got a wagon for her and she came down to the cafeteria with us to eat lunch.  She even got up and walked around a little bit.

Ella fell asleep in the wagon while we were eating lunch.

Friday afternoon they started the feeds through her new belly button.  They have to start them really slow, then increase every 3 hours until her body is able to tolerate a full feed.  The whole process took around 20 hours.

Ella only got upset about her new belly button 3 times the whole trip:  1) When she first realized that she has a tube coming out of her tummy.  Once we explained that this was the new fancy belly button we had told her about she was ok.  In hindsight I should have taken her online and shown her pictures.  2)  When they were hooking her up for the first time.  She was afraid it was going to hurt like getting an IV.  When she realized that she couldn’t feel it she was ok.  3)  The poor girl didn’t understand that the initial 20 hour feed was just a one-time deal.  She thought that she was going to have to spend the rest of her life hooked up to a pump all day and laying in bed.  She was very happy to hear that she’s only hooked up overnight and that by the time she wakes up in the morning she’s unhooked again.  The morning after her first full-night feed she woke up and said, “Mommy, you were right!  I’m not hooked up anymore!”

Saturday morning Ella amazed us all.  She was pretty much back to her old self, and was only using standard Tylenol to ease the pain.  The doctors couldn’t believe how well she was doing, and agreed that she was well enough to go home earlier than expected!  Joe and I were in shock!  So instead of the standard 3 or 4 nights in the hospital, Ella was only there 2 nights.  We were so happy to get back to the hotel!

Here's Ella as we were walking out of the hospital.  Doesn't she look great for just having surgery!

 Since Ella was being such a super star with everything, we gave her (and Joe) a special treat of going to see the Cincinnati Reds play.  We love baseball games and have seen the Reds a few times when we’re in town.  Ella loved her cotton candy and snow cone, and she loved sharing the huge nachos I bought.

Here's Ella and I with our hat full of nachos.  The truth is that Joe goes to the games because he loves baseball.  Ella and I go because we love ballpark food.

Here's Ella after the game.  Don't worry about her blue lips, those are from the blue cotton candy and blue snow cone.

Monday we just took it easy around the hotel and got to meet up with some friends for dinner, then Tuesday morning bright and early we headed home.  The drive from Cincinnati to Alexandria only takes us about 9 hours.  It sounds long, but the drive is so beautiful through West Virginia.  Ella played and watched DVD’s and was a trooper the whole trip.

Both Joe and I have been shocked at Ella’s speedy recovery!  We firmly believe it’s the power of prayer that has helped her bounce back so quickly.  One week after her surgery she was back in school and back to her normal self.  Physically her body is doing great and handling the additional calories beautifully.  We feel like she’s already gaining weight and even her teacher says that she looks chunkier!  Hooray!!!

Emotionally Ella continues to surprise me.  I got some great advice from an older EB kid who was about Ella’s age when she got her g-tube.  She basically said not to hide it from Ella or keep information from her.  Be open and honest.  Joe and I took great steps to explain the benefits of her new belly button (mainly that she won’t have to take yucky iron anymore) and to keep it positive.  Ella has fully embraced this.  She gladly tells people that she doesn’t have to take medicine anymore.  She helps me give her belly button a drink (flush it with water) and helps us hook up her feeding pump every night.  She gives herself her medicine and helps keep the belly button in place while I wrap her tummy.  I bought some fancy designed coban (fancy gauze) to hold it in place while she’s at school and Ella loves choosing which color and design she’ll use each day.

Joe and I are far less stressed!  Ella doesn’t eat veggies (except corn) so I have started putting pureed veggies through her tube every afternoon.  She’s still eating normally (except for the past couple of days because the poor girl has a cold) and we now know that her body is getting all that it needs.  I’m so glad that I can now give her the things that I know will help her without the fight of getting her to eat it by mouth.

Thank you all so much for your prayers and sweet cards to Ella.  She was so excited to open each and every one!  We appreciate each of you more than you know!

New Belly Button

I forgot to add that if you want to send Ella a card while she's in the hospital (she'll be there at least 3 days) shoot an email to Ella's email address on the left, and I'll get the address to you, or you can send it to our house and she'll get it when she gets home.  Thanks.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

When Ella was in the NICU and just a week or so old, the doctor who had been working with her pulled Joe and I aside.  He told us what little he knew about EB, how she had already beaten many odds that he knew, and he first mentioned a word that we would come to know all too well…g-tube.  I had never heard of a g-tube before then, nor had I ever known anyone who had one (or if I did they never told me they had it).  He explained that it’s very common for kids with RDEB to need a g-tube, and that while Ella was eating fine at that moment, just be aware that it might be something down the road.  As Ella grew, the more and more kids we knew who had g-tubes.  It became clear that within the RDEB community, it was almost more surprising for a kid NOT to have a g-tube than it was for a kid to have one.

Fast forward to last summer…we knew a g-tube was in our near future.  Ella hadn’t gained any weight in over a year, and her height growth had slowed down.  We were doing all I knew to do to get calories in her, but it just wasn’t enough.  In February Joe and I took Ella back to Cincinnati for an EB clinic visit, and that’s when we decided that it was time to get her a g-tube.  Our plan was to wait until this summer when school was out and she (and we) would have plenty of time to adjust to this new lifestyle.

That’s when the dreaded stomach virus hit.  After months of encouragement, nagging and Ensure, Ella had finally gained 3 pounds.  Within a week of the stomach virus it was all gone.  She was back down to 26 pounds, wouldn’t touch an Ensure with a 10 ft pole, and Joe and I knew that it was time for action.  We felt like we were watching our precious girl dwindle away.  I called the next week and scheduled Ella’s g-tube surgery.

Here are some answers to several questions that may be running through your head:

• This surgery is not a surprise to us.  Like I said, we’ve known since Ella was a baby that this was most likely in our future.  We’re not upset that she has to get this surgery.  In fact, we’re all relieved.  Joe and I are relieved that her body is finally going to have all the nourishment it needs to do all that it needs to do.  Ella is more than relieved that she’s not going to have to take yucky medicine ever again! (She says that this is the best news!)  This is going to be GOOD for her!  Joe and I were talking yesterday about Ella’s life verse, John 10:10, “The thief comes only to steal and kill and destroy, but I have come that you may have life and have it to the full!”  This g-tube, in a lot of ways, is going to give Ella LIFE TO THE FULL!  She’ll have more energy, gain weight, and likely her wounds will heal faster.
• Ella does eat…the g-tube isn’t because she’s not eating.  Fortunately Ella doesn’t face the eating issues that a lot of EB kids have.  Yes, she had throat surgery last summer, but that was the first step to getting a g-tube.  We wanted to see if that would help her gain weight before we went the g-tube route.  Ella eats, on average, between 1000-1200 calories a day, but her body needs 1600 to do all that it needs to do (heal, function, grow, learn, etc.)  She just can’t eat that much in a day.
• Ella will still eat “normal” during the day.  Since eating isn’t the problem, Ella will continue to function normally during the day.  She loves food and there is no way we’re going to take the joy of eating away from her!  She will eat lunch at school with her friends, and will eat breakfast and dinner with us as a family.  She will just receive additional supplements overnight to ensure that her body has all of the calories it needs.
• If at some point there is a cure, or Ella starts eating enough to sustain her weight, she could get rid of the g-tube.  I know many teenagers and young adults with EB who still have their g-tubes, but I also know several who have had them removed.
• Our hope is that Ella will start to gain weight immediately.  I talked to a mom recently and her son gained 5 pounds in 5 weeks.  Within 6 months he had gained 10 pounds.  I can hardly imagine Ella with that kind of weight on her body!  I haven’t had to buy her new clothes in almost 2 years, so I guess I’m going to have to start hitting up consignment stores (I'll accept hand me downs too)!  Currently Ella is in the 3^rd percentile.  We’re optimistic that by the time she starts kindergarten in August she’ll at least be on the percentile chart.
• We aren’t exactly sure how her recovery will be.  I’ve talked to parents who have reported that in as little as 3 days their kids were back to “normal” and seemed to be completely fine.  Most parents I talked to said their kids were back in school within a week.  Obviously we hope to have Ella back to her old self as soon as possible, but we’re not going to push her.
• At this point, Ella knows what she needs to know.  We have told her that she’s getting a very fancy new belly button and that with this belly button her yucky medicine will go straight into her tummy and she won’t have to taste it.  As the surgery gets closer we’ll explain more to her.  And after the surgery we’ll take great effort to explain how important this is for her body.  We don’t want Ella to feel like something is wrong with her because she has this, and we don’t want her to feel “weird” because of it.  Please choose your words carefully when asking about it and we’ll all work hard to keep this as positive as possible.

I hope that answers at least some of your questions.  If you have more please feel free to leave them in the comments section.

Ella’s surgery is just around the corner and we are asking that you all lift her up to her heavenly Father who loves her even more than we do.  Pray for an uneventful surgery and an incredible recovery.  Pray for Joe and me for comfort.  We know that this is the right decision, but it’s never easy to watch our precious girl have surgery.  Please also pray that we get good rest at the hospital (I know it’s a long shot) and that we’re able to take in all of the information given to us.  Pray for our insurance and that there are no hiccups with coverage.  Pray for the doctors and nurses who care for her.  Pray for patience for Ella during her recovery.

Thank you so much for loving Ella.

Last 3 weeks in a nutshell

Week 1:  Computer got a virus and was unusable for most of the week.  Finally got it to the shop at the end of the week.

Week 2:  Got computer back on Friday…week gone.

Week 3: Spring Break!

Yep, that pretty much sums it up.  Our computer got a pretty intense virus and was unusable for several days before I was able to get it to our computer guy.  It took a lot of work on his part, but after a week our computer was back in business.

While the computer was down we did one major activity that MUST be mentioned…Ella experienced her first circus!  She was very excited about seeing all of the animals do tricks.

Last week was Spring Break!  YAY!  Joe took the entire week off work, so we decided to get away for some much needed R & R.  Williamsburg here we come!  We attended a beautiful wedding on Saturday night (March 31^st), then went to a precious 1 year old birthday party on Sunday afternoon.  Right after the birthday party we headed to Williamsburg.  Ella was very excited to get away and know that she had both her mom and dad’s full attention for an entire week!

 

Monday was spent at Busch Gardens.  This was our first visit to Busch Gardens, so we weren’t sure what to expect.  In the end, we all had a great time!  Ella rode a few rides with Joe and I, but many of the kids rides are rides they have to do alone, and Ella was not about to do that, so she was limited in her ride options.  We did go see 2 shows, which she loved.  While waiting for the first show to start Ella looked at Joe and said, “Daddy, when I grow up I want to be on a stage like that and sing and dance.”  This is a change from her previous life goal of being a princess.

I did play the role of bad mommy at one point.  You see, I love roller coasters…LOVE them!  Ella is a big chicken.  They had a mini roller coaster for kids in the Sesame Street section…it had something to do with Grover.  Anyway, I made Ella go on it.  Yes, I’m the mom that forced my 4 ½ year old child to ride a roller coaster.  She hated every second of it.  In fact, half way through she screamed, “Are we done yet!!!”  Afterward she and Joe rode a much calmer ride and she said to him, “Daddy, I did not like that Grover ride!”  Hopefully when she gets older she’ll appreciate all that roller coasters have to offer.

Since I’m a big fan of theme parks in general, we stayed and closed the place out (it closed at 8:00, so it wasn’t too late).  Toward the end of the day the crowd really thinned out, so Joe and I started going from roller coaster to roller coaster and taking turns riding them.  The first was The Griffin…all I’ll say is that at the first drop I stopped breathing.  It was like my body couldn’t do anything…not scream, not panic, not even breath.  IT WAS AWESOME!!!  We rode all of the roller coasters that were operating that day and enjoyed having a bit of a flash back to our youth.

The next 2 days in Williamsburg were spent relaxing and walking around Colonial Williamsburg.    It was so peaceful and Ella loved seeing all of the animals.  While we were walking around she said, “Mom, there sure is a lot of horse poop around here.”  She was right.

We came home Wednesday night and spent all day Thursday doing laundry.  Friday morning we headed to New Jersey to spend Easter with Joe’s family.  Friday was an Easter egg hunt at Grammy’s house, and Saturday was an Easter egg hunt with cousin Andrew at his other grandparents house.  Ella racked up on candy!  Then, Sunday morning not one, but 2 Easter bunnies came to visit!  Mommy had talked to the Easter bunny before our trip and let him know that we were going to be at Aunt Trishy’s house.  Meanwhile, Aunt Trishy also notified the NJ Easter bunny, so Ella had candy from both the VA Easter bunny and the NJ Easter bunny…that makes for A LOT of candy!  Add that to the candy from 2 egg hunts and you have a 4 ½ year old with way more candy than she can possibly eat!

 

All that to say that while we’ve been MIA for a few weeks, we’re still here and doing great!

Back on track

Well, Ella got through the stomach virus…or so we thought.  She was fine all day Wednesday, went to school Thursday and Friday, and even had an iron infusion Friday afternoon.  Then last Sunday night (March 4^th) the stomach virus struck again.  Around 10:00 pm Joe went in to kiss her goodnight, and she threw up again…everywhere!  When I say everywhere, I mean EVERYWHERE!  All in her hair, all over her arms (she was wearing short sleeved pj’s), all over her legs (I threw her socks away and would have thrown her jammies away too except they're her favorite Sponge Bob pair), all over her bed, the carpet, the wall…you name it.

Needless to say, we had to start a bath and bandage change at 10:30 pm.  Joe and I worked as fast as we could.  He gave her a bath while I took care of her sheets and getting her bandages ready.  We started her bandages at 11 pm and the poor child didn’t get into bed until midnight.  All three of us were completely exhausted.  She stayed home from school the next day (obviously) and both Ella and I slept in.

The good news is that when she woke up she was asking for food, something she hadn’t done at all the week before.  Her appetite has steadily increased and yesterday she took in a whopping 1385 calories (that is nearly unheard of for Ella).  The bad news is that now she won’t even touch Pediasure or any other calorie drinks, but at least it seems like she’s taking in enough calories in her food and doesn’t need the Pediasure.

All of this really showed Joe and I how much she needs a g-tube (feeding tube).  We’ve talked about it numerous times over the past year and had decided that this summer we were going to go ahead and get one.  Unfortunately with this stomach issue, not keeping anything down and not wanting to eat for a week, Ella lost weight.  She probably only lost about 3-4 pounds, but Ella didn’t have 3-4 pounds to lose.  She is noticeably skinnier and her clothes are now too big.  One morning she was walking from her bedroom to our bedroom and her pajama pants fell right off…they are size 4T.  Given all of that, we decided to move up her g-tube surgery.  The plan now is that she’ll have the surgery before the end of the school year.

As weird as it sounds, we’re both really relieved.  God has given us such a peace that this is the right decision, and we’re eager to go ahead and get it taken care of.  One little boy that I know of got his g-tube a little over 6 months ago.  In the first 5 weeks of having it he gained 5 pounds.  In the past 6 months he has gained 10 pounds.  That is incredible!  I can’t imagine Ella being 10 pounds heavier.  That would give her a little bit of chunk, and actually put her on the chart for growth.  This will also give us an outlet to give her much needed vitamins without having to fight with her to take them (namely, iron supplements).  This also will mean that for the first time in 2 years, I’ll have to go buy her clothes.  Any clothes she has gotten in the past 2 years were because I wanted to buy them, not because she actually needed them and was outgrowing the ones she had.

I’ll be sure and keep everyone informed of when the surgery will be.

After Sunday night Ella was back to her sweet self.  She went to school Tuesday, Thursday and Friday and has had a great weekend.

Ugh!

At 4 years old I thought we had pretty much been through it all…except those lovely teenage years, of course.  Alas, I was wrong.  This week we experienced yet another “first” in the life of Ella.  Her first stomach flu.

I know what you’re thinking…how is it that a little girl who attends preschool is just now having her first bout of stomach flu?  That’s a great question and the answer is, I have no idea.  She either has an immune system of steel, or is just really good at avoiding illnesses.  Either way, I am so thankful that she hasn’t had to go down that road.

All of that, however, ended this week.  The stomach flu has been going around the preschool and as much as I hoped we would avoid it, I knew in my gut that it was just a matter of time.  Sunday we went to church and Ella seemed a bit lethargic.  After lunch we came home and she slept for almost 3 hours.  I just chalked it up to lack of sleep (which happens a lot on the weekends).  After her nap and a snack, she seemed back to normal.

Sunday night I heard her wake up to get a drink of water several times throughout the night, but I didn’t hear anything overly concerning.  Then Monday morning she woke up almost an hour earlier than usual.  When I went in to check on her and ask if she wanted her standard morning chocolate milk, she said no.  So I asked if she just wanted breakfast instead, and again, she said no.  That’s when it happened…my sweet girl got sick.

After things calmed down I moved her into the bathroom where I stripped her down.  She looked at me with her precious face and said, “Mommy, I think you better call church school and tell them I won’t be able to come today.”  Then she asked for doggie…poor, puke-covered doggie.

Ella spent the entire day laying on the couch and watching TV.  She slept A LOT!  I spent the day cleaning, sanitizing the house, and doing laundry (thank heavens for the “sanitize” setting on our washer).  She did manage to keep down a few bites of chicken noodle soup, but that was it.  The saddest part of the day was that Ella had to miss her preschool graduation pictures with her class.  This upset both Ella and me.

All that said, I’m crossing my fingers that today is better.  As of right now she’s still sleeping, so I’m hoping she sleeps the stomach flu away and wakes up bright eyed and bushy tailed.  I’m also praying that Joe and I aren’t next on the list.