Posted (Tina) in All Posts on July-24-2010

It’s been a few weeks since our last post.

Mostly, we’ve just been trying to work on feeding and Gi issues. Overall, it has improved. We had quite the challenge getting the food pump to work – Ella is too mobile. I had this suspicion the last time we left the hospital and I was correct. Once we had her home for a couple of days, she would start to move and literally the IV pole holding the food bag and food pump (stands over 5 feet tall) would come tumbling down, almost wiping out Ella a few times. I decided that scenario was not worth it.

From there, I tried to switch and feed her more at night and just do small feeds several times per day during the day. Anytime I would use the food pump at night, even if I was just delivering water, she would wake up and fuss intermittently all night. That got old, real fast. Plus, Josh has been thoroughly enjoying his new job (praise God) and so when I’m up all night with Ella, I have no reprieve the next day. With most of us, that is fine for a few days. But after days and days in a row, it can make you a little squirrly.

Now, we’ve worked up the bolus feeds so that we are having feeding sessions about 7-8 times per day. We’re also trying to keep her upright for at least 15-20 minutes after a feed to help the food drain from her tummy. This seems to be working ok although I know Ella is still uncomfortable. Her reflux has gotten worse – now when she retches after a feed, we are sometimes getting food coming up too which has never happened before. This means that her nissen is getting looser and it puts her at a greater risk to aspirate.

I guess I’m trying to say that this is still not an optimal feeding schedule for either one of us, but it seems to be the best compromise with life at this point. I have to say, feeding my daughter is one of my least favorite things to do since it usually involves a high degree of discomfort for her. I look forward to the day when this part gets easier ~ it’s always been a challenge for us.

Along with the feeds, her stool has improved too. I don’t know that it would be considered “normal” (still some mucous), but I have not seen any blood. So whether it is the food itself or the sulfasalazine (new GI medicine) or a little of both, she seems to be in a better place than we were a month ago.

She’s not sleeping at night like she used to in the past – 9-10 hours at a time. Now, I’m lucky if we get 6-7 hours. When we went for her GI follow-up appointment with her doctor, I asked if sulfasalazine could cause insomnia. He noted that is not a side effect he normally hears about, but it doesn’t mean that it could not be playing a part. The GI doctor wants us to stay on our current regiment, increase the amount of food versus water in the diet (increase calories) to help Ella gain back some of her weight. So far, she gained less than a half a pound in 3 weeks (went from 13 kilos to 13.2 kilos, about 29 pounds). He wants to see if we can improve that number. Also, he wants Ella to go for allergy testing. We plan to see him again in September to review and reassess where Ella is at with her weight/feeds/stools. Please pray for the Bun to get better sleep and increased feeding tolerance.

A fun surprise over the past couple of weeks: I will leave the play area to walk into the kitchen. When I come back around the corner, Ella is crawling more and more. She seems to have this newfound freedom with crawling all over. The real surprise is that our physical therapy exercises have been paying off – almost too well. I will come back around the corner and a few times now, Ella is climbing the stairs! She is getting the hang of going up them but hasn’t quite figured out how to get down. Because we have an oversized curved staircase, it makes it tough to block it off. Although I’d rather not impede any urges that Ella has for mobility. I guess it just means that I have to really be on my toes now!

In between the new job for Josh, he also went and had surgery last week on Thursday to repair a hernia. He is resting and trying to recuperate so he can return to work tomorrow. This led into a very relaxed and mellow birthday celebration here at home for the Bun. We tried to see if she was interested in the cake (even just playing with it), but nothing so far. On that note, our friends had a beautiful birthday cake made for Ella and delivered it to our house the other day. So sweet and tasty – Dad and I enjoyed and ate Ella’s portion for her!

We took a short video and sang “Happy Birthday” to the Bun, but the microphone got covered up unexpectedly so you can’t really hear us! Oops!

It makes us a little sad that she still doesn’t really understand that it is her birthday or that anything special is going on. Emotionally, it is hard to accept that it might be years before Ella engages during a song on her birthday. And then there is always the fear that she may never respond. In the scheme of things, God has made her just the way He wants her, but it would be unrealistic not to admit that our parental desires for “normalcy” still exist.

Since Ella turned three, we no longer get support from the Early Intervention Program (federal program), so no more therapies for the Bun which is such a bummer because she needs them! The school district is not going to be able to provide occupational therapy, speech therapy or physical therapy, but is more focused on her education needs. We should hear in mid-August as to whether or not the school district is going to be able to provide any assistance to us. Aside from that, we’re still trying to see if we can get Ella on Medicaid through one of the waiver programs, but so far, she has been on the wait list for 2+ years (Medicaid would not only cover therapies, but kick-in to assist with medical needs that our primary insurance does not cover). I’m in the process of applying for another waiver program that was established recently ~ we’ll see if she can get benefits sooner using this avenue instead. We’ll probably know in the next 30-60 days. Please pray for a miracle – we could really use some support for services.

The biggest praise on our hearts and minds is Josh’s new job – he just loves it. I’ve never seen him so excited and motivated to go to work. I know it is a new job and he is still in the honeymoon period, but I have to say that this is the best thing that has happened to Josh in a long time. It’s been a nice change of pace for life, although it’s made my personal life a bit more hectic. I’ve been trying to work too, about 5-10 hours per week. It doesn’t sound like a lot, but it’s an intense type of work (data analysis) and I’m pretty worn out just taking care of Ella and Lola. Please pray for my perseverance through this chapter of life.

And in some ways, I can’t believe it has been 3 years since Ella was born. Yet mostly, it has felt like an eternity. One thing is for sure- all of you out there virtually and in person has made this journey so much more rewarding and helped us to endure the times. Thanks for the all the continued support and prayers.

John 16:33 (NLT)
I have told you all this so that you may have peace in me. Here on earth you will have many trials and sorrows. But take heart, because I have overcome the world.