Posted (Tina) in All Posts on October-17-2009

Posted (Tina) in All Posts on October-14-2009

Ella has been doing well since our last update.

We’ve been able to increase the density of her food to 30 k/cal. We tried 28 k/cal for 6 days without issue, so we increased to 30 k/cal. We’ve been on this new diet for about 6 days now too and so far, so good. It’s nice for me because it means that I feed Ella only 5 times per day versus 6 times per day, as of recent. It also helps because her food volume has been decreased to 1170ccs. Less fluid is never a bad deal for this girl.

Also, this past weekend we hit another huge milestone. I noted that Ella was laying down in her Pack-n-Play watching a video. I walked into the kitchen, but when I came back out, Ella was sitting up!!! I did a double-take: wait, I didn’t put her in that position! Even over the last few days, it has been happening more and more.

Just this past week, her interest in becoming mobile has heightened significantly. I will try and take her out of the Pack-n-Play to give her exercise and play on the carpet. But more times than not, she doesn’t seem as interested. The Pack-n-Play is such a safety zone for her. So, she has started to roll over onto, sit up on her own, lean forward to get on her hands and knees. All of this without my prompting, which is the best. She gets herself into all kinds of positions in the Pack-n-Play, exercising a lot each day. She’s coming over to the edge. She used to sit there, make some noise to get my attention and hold her hands out, so I can help her stand up and hold the side of the Pack-n-Play. The past few days: she’s already over to the edge on her knees, holding the top of the Pack-n-Play with her hands. Then, she gets my attention because she still doesn’t know how to stand on her own. The PT advised to grab her by the ribcage and tilt her one direction. Sure enough, the instinct is for her to place one foot flat and then I help lift her. All I can say is that all of this is very good and a huge milestone for Ella. She has turned a huge corner and is continuing to build strength each day.

We ran out of Flovent about five days ago. This is an inhaled steroid that Ella has used for about a year now. The pulmonologist prescribed it to her when she had a chronic cough. We later learned that the chronic cough was a side effect of Captopril. At recent check-ups, the pulmonologist has stated that it is not a bad thing for her to take, but was not convinced that she needed this medicine. I guess we just wonder how much it is doing for her. We’ve run into trouble with this before, like when we thought that Reglan might not be doing much. But here we are again, wondering if Flovent is really having an impact. So, we are going to try some time without to see if there are any adverse side effects. She is still on so many medications every day that we always want to try and eliminate, if at all possible.

With the latest SVC procedure behind us, Ella is also more tolerant of her therapies. Below are some pictures of a recent OT session.

And on an ending note, some more cute photos of the Bun playing on the floor with her computer!

Posted (The West's) in All Posts on October-4-2009

Ella has been doing much better since her return from the hospital. Overall, she is less fussy and irritable.  This just means that the pressure from her occluded SVC must have been causing some discomfort.

Every morning, we’ve had bloody noses since her procedure.  This is a side effect of her new medicine, Plavix.  It was so bad this morning that we finally called the cardiology department at the Children’s Hospital to ask for some direction.  The on-call doctor advised to skip her afternoon dosage today.  If we do not hear from a doctor by tomorrow at 2pm, we were instructed to call back for further direction.  We know that Plavix, along with her daily dose of Aspirin, is intended to help Ella from tissue re-growing into her SVC stints.  However, really bad bloody noses are not a great side effect.  We’re hoping to hear back tomorrow to see what we can work out.

Ella visited the pediatrician this past week.  We discussed her weight gain.  She went from 25.5 pounds in late July to 28 pounds at the hospital.  However, we weighed her again this past Thursday and she was 27.5 pounds.  This means that she likely had a bit of fluid on board prior to her SVC procedure.  In any case, Dr. Perry was happy with her weight gain.  At her 2 year check up, he stated that if she gained 4 pounds over the next year, that would be good.  However,  he tracked her weight on the growth curve and stated that for Ella, this increased weight gain is good.  So, he wants to keep her calories each day the same.

From there, we discussed changes to her food plan.  Dr. Perry would like to see her switch from an infant formula to a toddler formula, which has more of the minerals and vitamins that are age appropriate.  However, most of the toddler formulas are 30 k/cal per ounce.  Right now, Ella is on 26 k/cal.  When we’ve tried increasing the density of her food before, her tummy has given her grief. But it has been a year since we have tried and a year since her nissen surgery, so we think the time is right to try again.  We wanted to wait until her SVC was re-opened, but otherwise think that this is a good time to work towards this transition.

I suggested that we keep her on the same food and slowly increasing the calories, to see if she can tolerate the increased density.  This way, we know it is the density and not the food itself. One good part: since her caloric needs are sufficient, this means that her fluid volume will decrease if we can make it to 30 k/cal formula.  Just yesterday, we tried increasing the Ele-Care to 28 k/cal (1250 ccs).  So far, so good.  This is the first time that she has remotely tolerated a higher calorie food.  It is 100 ccs less than her 26 k/cal formula.  We’ve continued with 6 g-tube feedings per day.  Her body seems to like the smaller amounts, spread apart during the day.  With reduced volume, we can likely try 5 feedings per day when we’re ready to try 30 k/cal formula (1170 ccs).

We’ve still battled granulation tissue around Ella’s g-tube, so Dr. Perry took care of that for us.  Ella also received her flu shot.

We have an appointment later in the month for another follow-up echocardiogram, to check the flow of the SVC and make sure things look good.  Also, we have an appointment with an Ear, Nose, Throat specialist to check the fluid in Ella’s ears on Nov 6th.  We have a feeling this appointment might lead to another procedure, placing tubes in her ears.  But we also don’t know if the fluid in her ears might be causing discomfort along with less-than-perfect hearing.  So we’re hoping that this might be a way to eliminate this problem, especially as it relates to her hearing.

One time of day that Ella is still incredibly fussy is the morning. When she was younger, even 4 months ago, she would wake up happy and kicking in her crib.  She would smile at you.  Not any more!  Each morning now, she wakes up screaming and will not tolerate anything.  Not even a diaper change.  Once you pick her up or give her something she wants, she stops.  Wow, I know that these are terrible twos.  But I’ve also heard that age three can be even more challenging.  Yikes.

The last week, Josh was kept busy with contract work.  We’re thankful for the income and pray for continued guidance on His plan and will for our lives.

An excerpt from my devotional the other day that resonated with me:

Psalm 119:71 – It was good for me to be afflicted

It is a remarkable occurrence of nature that the most brilliant colors of plants are found on the highest mountains, in places that are the most exposed to the fiercest weather.  The brightest lichens and mosses, as well as the most beautiful wildflowers, abound high upon the windswept, storm-ravaged peaks.

One of the finest arrays of living color I have ever seen was just above Saint Bernard Hospice near the ten-thousand-foot summit of Mount Cenis in the French Alps.  The entire face of one expansive rock was strikingly vivd yellow lichen, which shone in the sunshine like a golden wall protecting an enchanted castle.  Amid the loneliness and barrenness of that high altitude and exposed to the fiercest winds of the sky, this lichen exhibited glorious color it has never displayed in the shelter of the valley.

As I write these words, I have two specimens of the same type of lichen before me.  One is from the Saint Bernard area and the other is from the wall of a Scottish castle, which is surrounded by sycamore trees.  The difference in their form and coloring is quite striking.  The one grown amid the fierce storms of the mountain peak has a lovely yellow color of primrose, a smooth texture and a definite form and shape.  But the one cultivated amid the warm air and the soft showers of the lowland has a dull, rusty color, a rough texture, and an indistinct and broken shape.

Isn’t it the same with a Christian who is afflicted, storm-tossed, and without comfort?  Until the storms and difficulties allowed by God’s providence beat upon a believer again and again, his character appears flawed and blurred.  Yet the trials actually clear away the clouds and the shadows, perfect the form of his character, and bestow brightness and blessing to his life.