Friday, August 31, 2012
Let me start by saying a huge THANK YOU to all of you who have prayed diligently for Ella’s iron levels. It has been a long and stressful road.
Let me start with the end of February. That’s when we started going to the local Children’s blood clinic to get Ella iron infusions. On our first visit her hemoglobin level was 6.1. Just for comparison sake, the “normal” level for a 5 year old child is around 11, so Ella was almost half what she should have been.
We started with iron infusions every other week and were seeing little, if any, improvement. We then tried doing them every week to 10 days, and still weren’t seeing the kind of improvement we had hoped. In fact, it wasn’t unusual for us to go in a week after an iron infusion and for reasons no one could explain, her iron would be LOWER than it was before the iron infusion. It was frustrating to say the least.
Finally, when Ella went in for her g-tube surgery we talked to the doctors and decided that it was time for a blood transfusion. This was not a decision we made lightly. It was made because what we were doing wasn’t working, so we had to take things up to the next level. The blood transfusion bumped her hemoglobin up significantly, but she still wasn’t within the “normal” range. On June 8th, one week after her second blood transfusion, Ella’s hemoglobin was up to 10.9 which was the highest it had been since she was a baby! Unfortunately just a couple of weeks after that she dropped back down to around 9. Not nearly as bad as it had been, but still not ideal.
On August 20th, after returning from Wyoming, we went to get Ella’s blood checked. The nurses could not get an IV started. Ella’s veins were shot. After about 5 tries they finally decided just to see if we could get a small blood draw and just check to see if her hemoglobin was at least at a level where we could wait another week to do something. Since it had been over a month since her last blood work, we all were under the assumption that she was going to be low. After they got the little blood draw, I went into the exam room and started praying for a miracle. That was the only thing that was going to help at this point…a miracle that her hemoglobin would somehow be at a decent level. A few minutes later the nurse came in and showed me the results of Ella’s blood work…10.7!!! God had answered our prayer! I did what any mother would do in that situation…I burst into tears. The doctor came in and I got a great lesson on high altitude and its effect on red blood cells and hemoglobin levels. I now understand what they mean in the Olympics when they talk about “blood doping.” When Joe came home from work that night he immediately started looking for the highest altitude in Virginia. In case you were wondering it’s a little town called Monterey, VA, population around 200.
Today we went back to the doctor again to see how things looked. We didn’t even try for an IV this time, and just decided to check her blood and see where things were. I prayed all morning for a 10…just a 10 was all we needed to avoid getting an IV. Ella’s veins need a break, and as selfish as it is, I didn’t want to spend my day sitting in a blood clinic all day (and when I say all day, I mean ALL DAY…we got there at 8:45 am and in the past when she’s had a blood transfusion we’ve left around 4pm). After the labs were drawn we went into the exam room and I just prayed and prayed. A few minutes later the nurse came in with a smile on her face…this was a good sign. 10.6! Amazing! Ella and I were so excited that we both stood up and did a happy dance! And we happy danced our way right out of the office.
We are, by no means, out of the woods. Ella is constantly losing iron through her wounds, so we have to go back in a few weeks to get things checked again, but I have to say that for today I am rejoicing! Ella’s little body has to endure so much, and sometimes I just feel like the kid doesn’t get a break. Well, today she finally got a little break. We went to Target to celebrate and I told Ella she could pick out any prize she wanted. She chose a pack of Kleenex with jack-o-lanterns on it from the $1 section. I love this kid!
Tuesday, August 28, 2012
I’m pretty sure that I’ve mentioned this on here before, but Ella was named after my grandmother, Big Mama. Her legal name was Annie Ella Jean, but as an adult she went by Jean (although most of her family called her Ella Jean). I think I was a teenager when I decided that if I ever had a little girl I wanted to name her Ella. I thought it was the most beautiful name and couldn’t understand why no one else in the family hadn’t snatched it up. When we found out that Ella was on her way and were discussing girl names, Ella was the winner from the beginning. (Of course at the last minute we decided to legally name her Joella after both Joe and Big Mama, but we’ve always just called her Ella).
It was funny because after Ella was born Big Mama suddenly decided that she liked the name and started telling people that her name was Ella Jean, or Big Ella, and that she had a great granddaughter named Ella just like her.
I still love the name Ella. I feel like the name suits her so perfectly. I can’t imagine her being named anything else. What is really funny to me is that Ella also really loves her name. She loves it so much that whenever I ask her what she wants to name something (stuffed animal, fish, etc.) she always decides that “Ella” is the best choice.
When Ella had her g-tube surgery the EB clinic staff brought in a bag full of various stuffed dogs and Ella got to choose the one she wanted. She chose a black and white doggie. Since we already have “Doggie” in the house (the original brown doggie that she got when she was 1 year old), I encouraged Ella to choose a different name. After her surgery she told me that she had decided what she wanted to name her doggie…Ella. When I asked how we were going to know the difference between her and her dog she said, “I’m Ella the girl, and this is Ella doggie.” How logical. We also just recently added a new goldfish to our family…Ella the fish.
I can’t find the clip on youtube, but I seem to remember an episode of The Cosby Show where Olivia told Cliff that she was going to have 4 daughters and name them all Olivia. They would be called 1 Olivia, 2 Olivia, 3 Olivia and 4 Olivia. When she needed to call one of them she would simply say, “3 Olivia! Please come here 3 Olivia!” This is how I imagine Ella’s house. I’ll have to call up and ask for “Ella…the original.” Then again, this concept has worked for George Foreman who has 5 sons named George Jr., George III, George IV, George V and George VI.
Just a little side note: Ella officially starts school a week from today. Please pray for her and everyone involved. Thanks.
Wednesday, August 22, 2012
So last week Ella attended K-Prep at her new elementary school. For those of you who don’t live in the City of Alexandria, K-Prep is basically practice kindergarten. It’s just the kindergarteners in the school and they are only there for a half day. This gives them the opportunity to get to know the school without all of the other students running around. It also gives kids who have never attended preschool, an idea of what school is really like.
Going into the week I knew things were going to be rough. Ella does not like new “adventures” and now she was going to be experiencing something completely new…new school, new teacher, new friends (only 1 little boy from her preschool is at the school and they are in different classes), and a new aide.
Monday morning was rough. Joe and I did go into Ella’s class and talk with the kids about Ella’s boo boos. They just listened and didn’t have any questions. Ella cried when we left, but I could tell she was really trying to be brave. I left for 30 minutes to drive Joe to work, and soon I got a call asking me to come back to the school. I spent the rest of my day sitting in the hallway…except for the 5 minutes that I ran to the office to ask a question. When I came back from the office Ella and her helper (not her permanent aide, but a nice teacher that was helping her for the day) were sitting in the hallway and Ella was hysterically crying. A little boy had accidentally stepped on her toe. Ella was a complete mess! I comforted her, looked at her foot, and encouraged her to go back into class. The rest of the time I sat in the hallway right outside her room. When the rest of the kids went to lunch I picked Ella up and we went out for a special lunch.
Tuesday was a complete disaster! In a nutshell, Ella started crying the second she woke up and cried all morning. This made me frustrated, so I started crying too. Poor Joe had to do all he could to keep us both together. Ultimately Joe spent the day working from his blackberry while sitting in the hallway of the school, I came home a complete mess, and Ella stayed in class and every 5 minutes her helper would come out to make sure Joe was still there.
Wednesday I was on my own. There was a new helper for Ella that day, so I dropped Ella off in the morning and sat in the hallway until recess (around 10:30). When the kids came in from recess I headed home. Ella still cried and was a mess, but I knew I couldn't spend another day sitting in the hallway and she needed to try and do this on her own.
Thursday and Friday I did the cut and run…take her to the cafeteria (where she gets dropped off), hug and kiss Ella, reassure her that I love her more than anything and am so proud of how brave she is, then walk out the door. I can’t spend my entire days in the hallway, and it’s not healthy for Ella if I do that. She still cried a lot and clung to me as hard as she could, but both days when I picked her up she had a huge smile on her face. She was so proud of herself for going to school and making it through the whole day without me. The two ladies that were her helpers were terrific! They were very understanding and helped Ella cope the best they could. According to the second helper (Wed-Fri), Ella stopped crying within minutes of me leaving, and she was fine all day. She didn’t ask where I was or say that she needed me. That’s good news.
I’d be lying if I didn’t question whether or not Ella is ready for this. I know academically she is more than ready, but I don’t want to do permanent emotional damage by forcing her to go to school when she’s not ready. On the flip side, I don’t want to do permanent damage by not having her try new things, even things that seem scary. It would be extremely easy for me to shelter her forever, but I don’t want Ella to be 35 and still living at home because she’s scared of moving out of the house.
I had to keep reminding myself that this was just the first week. Hopefully when she meets her permanent aide, and starts to feel more comfortable with her new surroundings, then she’ll start coping better. If things haven’t improved by December, we may have to reevaluate our situation.
The good news is that while I was sitting in the hallway I heard the teacher call on Ella to answer a question. Ella answered with confidence. She still refuses to raise her hand in class, but at least when she’s called on she’ll give an answer.
All of this to say, please pray for Ella (and her parents) during this transition. School starts September 4th and my plan is to not leave the house for the first few weeks. We only live 2 blocks from the school and Ella knows that it takes just 1 minute for me to get there if something were to happen. Please just pray for peace and that her anxiety will diminish. Thanks.
Friday, August 17, 2012
My deepest apologies for not posting for over a month. We’ve been doing some VERY exciting things and honestly, posting on the blog wasn’t a priority. Sorry.
On Tuesday July 17th (my awesome husbands birthday!) Ella and I headed out to Wyoming to spend 28 days with my family. Yes, 28 days. We had several motivations for such a long trip. 1) We wanted to escape the DC heat to get to the cooler mountain air. 2) We wanted to see how Ella’s skin would respond in a drier climate, and 3) We wanted to spend some quality time with the Alexander family!
We had a great trip and Ella got to participate in a lot of fun, outdoor activities that we don’t typically do here in DC. Here are some of the highlights.
She got to float the Platte River in Paw Paw’s canoe
She got to roast marshmallows at GiGi and Paw Paw’s cabin on the mountain
She got to spend the night in Paw Paw’s tee pee
She got to take both Hip Hop and Ballet dance lessons
She got to spend lots of fun time with her Texas cousins
On top of all of this, Ella also got to see a puppet show at the library, see a Cat in the Hat story time at the library (you know she loved that), went to the planetarium, went to a band concert in the park, saw a musical at Casper College, got to meet SO many awesome friends and some very special people to her mommy, watched a ton of Olympics, cooked with GiGi and so many more fun activities!
It was a great trip! My brother and his family also got to come visit, so there were 9 of us all staying at my parents house (10 when Joe arrived on August 4th).
Since we don’t have any immediate family close by, we don’t really get to take advantage of their free babysitting, so while we were in Wyoming Joe and I tried to make up for it. My dad babysat Ella one night so I could go see my mom’s play, and both of my parents babysat her for 3 nights in one week, so that Joe and I could catch up on our movie watching. Oh yes, we saw 3 movies in 1 week and loved every minute of it. While in Wyoming Joe and I celebrated our 7 year anniversary!
When you ask Ella what her favorite part of Wyoming was, she says that it was throwing rocks in the river. When daddy joined us, that was the first thing on her list to show him.
My mom's play, "What Were We Talking About?" went off beautifully! They had 2 nights completely sold out and the third night was almost sold out. They got standing ovations every night and the audience laughed and cried with all 4 characters. It was a wonderful play and I'm so glad I was able to go see it.
This week has been K-Prep at Ella's school. I'll save that for the next post since this is already way too long.