Yet another big update

I’m sorry I’ve neglected the blog for the past couple of weeks.  We’ve had A LOT going on and I just didn’t have the time to post anything.

First of all, thank you!  Thank you for your kind emails, calls and prayers with heartfelt concern over Ella’s skin.  She is looking much better and seems to be on the mend.  We still have some healing to go, but at least now she can walk around and move without a lot of pain.

GiGi and Paw Paw arrived on Wednesday May 16.  Thursday the 17^th was Ella’s last day of preschool.  I still can’t believe it!  How in the world did she become a kindergartener so quickly?  I kept telling her that I decided she wasn’t allowed to graduate and she would stay with Mrs. Bull at church school forever.  She’s not allowed to turn 5 years old.  Ella insists that she MUST turn 5 and has to go to big kid school!  She can’t just stay a baby!

Thursday night was preschool graduation.  I fully expected to be a complete mess and cry the entire night…shockingly that didn’t happen.  I was able to hold back my tears and focus on how proud I am of Ella and how far she’s come.  Her biggest highlight was that the preschool gave her a real bible, not a kids story bible and not a New Testament…a REAL bible.  She’s been bringing it to church every Sunday and asks daddy to read stories from it to her every night.

 GiGi and Paw Paw celebrated their 42^nd wedding anniversary while they were here…42 years!!!  I knew we had to do something special for them to celebrate, so we asked Metti to make us a traditional Ethiopian meal.  GiGi had eaten at an Ethiopian restaurant one time, but this was a new experience for the rest of us.  You know when you have a food that is so good that your mouth craves it for 2 days afterward…that was how good this food was!  Metti made a chicken dish that had the most amazing red sauce!  It was definitely spicy even though she said she toned it down for us, but, boy was it delicious!  She also made a vegetable dish and a beef dish (because she knows Ella loves beef so much).  The funniest part was when I was setting the table and asked her what silverware we needed.  She smiled and said, “None, you eat this with your hands.”  If you haven’t had Ethiopian food, they have this bread called injera and you use the bread to kind of grab your food, then wrap it around the food to eat it.  At the end of the meal the rest of us had hands covered in food, but Metti’s hands were as clean as they were before dinner.  I guess we need more practice eating with injera.  To finish things off she went to an Ethiopian bakery and bought a white chocolate cake.  Oh. My. Word.

We had a great week with GiGi and Paw Paw.  Ella, GiGi and Paw Paw played games, sang songs, read books, danced and anything else they decided was fun.  Ella is growing up so much and really enjoyed their company.

GiGi and Paw Paw left on Thursday May 24^th, but we couldn’t stay sad for long.  As we were driving home from dropping them off at the airport, Grammy Janet called to say she was almost at our house.  She arrived 10 minutes later.  Ella is a lucky girl to get to see both sides of her grandparents in the same week!  Unfortunately Grammy could only stay for 2 nights, but we were glad she could come by to see us.

In other exciting Murray news, Ella has officially gained 4 pounds…this puts her in the 30’s!  WOO HOO!!!  This is the biggest Ella has ever been.  You can actually see the chunk on her and we love every bit of it.  I know some parents worry about their kids because they’re so big, and people are very quick to talk about how big some kids are.  Trust me, if given the choice between the too skinny kid and the chunky kid…take the chunky kid.  With her new belly button Ella has gained 4 pounds in 4 weeks.  And even better that that is that if I want her to eat something but she doesn’t want to, I just put it through her belly button.  She’s been getting fruits and vegetables (which she hardly touches) and she’s been getting full-fat, unsweetened Greek yogurt.  The color of her skin is amazing and her skin that doesn’t have boo boos looks better than it has since she was a baby.  She has more energy and even her personal trainer (yes, she has a personal trainer) can’t believe how much better she’s doing with her exercises.  All in all, we’re big fans of the g-tube.

Unfortunately we’re still struggling with her iron levels.  We go in again later this week so hopefully we’ll finally see her up a bit more.

Also, (see, I told you a lot has happened) Joe and I had a meeting with Ella’s new Elementary school on Tuesday May 22^nd and we are very confident about next year.  Before we started meeting with the school we had been working with another organization in town that helps kids with special needs.  They have been helpful throughout her preschool career, but we really felt strongly that Ella needs a one-on-one aide to attend kindergarten and they were hesitant to recommend one for her.  It’s a very large school (about 700 students and 6 kindergarten classes), there are a lot of kids who speak English as a second language and some who don’t know English at all (there are approximately 82 languages represented at the school).  With Ella being  new to the school, we wanted to make sure she had someone whose job was just to help her and protect her during the day.  Fortunately the school was in our camp and really pushed for the one-on-one aide.  Also fortunately, Joe has 2 very important letters behind his name (JD) and had done a lot of research on special needs law and had talked to others who work in special needs law, so we walked into that meeting knowing Ella’s rights.

That said, I have to give props to the school.  They have been wonderful!  The school received a copy of a DVD that Debra of America (the EB organization) produced for school administrators, and the principle had everyone watch it.  If there is a teacher, nurse or administrator that will come in contact with Ella, they have watched the video.  A couple of months ago the principle asked us to bring Ella in to meet everyone and they all wanted to talk with us.  We sat in their conference room with about 10 people and they all asked questions about Ella and her EB.  It is evident that they want to see Ella succeed and will do anything they need to to ensure that happens.  Joe and I feel so blessed to have this neighborhood school so close (just 2 blocks away) and we know that Ella will have a great year.  Ella is SO excited to attend kindergarten and "big kid school."  She talks about it every day and has started doing a lot more things on her own because she's almost 5.

Last but certainly not least, we have a reader in our house!  Ok, she's not reading novels yet, and she still needs help with some words, but she fully understands the concept of reading and knows how to sound out words.  GiGi worked with her a lot while she was here, and now Ella can sound out most words she comes across.  She is very excited about this new development, as are we.  Last night we were playing a rhyming game on the computer and Ella needed to find the words that rhymed with cat.  She looked at her list of options and before I could say anything she just started reading them, "Fox, no.  Fish, no.  Hat, YES!"  It took me a minute because I was so shocked by this.  I've known for a long time that she's been soaking in reading.  Ella is one of those kids that observes for a long time and just soaks in all of the information, then once she feels like she has it all figured out she'll just bust out with it.  I knew in my head that reading would happen that way.  She watches reading videos and watches shows like Martha Speaks, Word World, Super Why and The Electric Company and I knew she was grasping all of the concepts of reading (the English language is actually pretty confusing).  So I knew that one day when she had it all figured out she'd just start reading, but I was still completely shocked.  Last night SHE read to JOE, instead of the other way around.

I think that sums up all the good news we’ve had the last 2 weeks.  I am now mapping out our summer plans and look forward to spending major quality time with my girl.

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!