Well, Emma has gone up and down in weight worse than a yo yo dieter. The good news is the trend overall is upwards. She had a g.i. appt. today to burn off some granulation tissue (type of scar tissue) that formed around her button. She's 27 1/2 inches tall and 16 lbs 7 oz. (this bumps down to 16 lbs. Frequently). She is finally sitting unassisted (if we sit her up and bend her knees. hehe) Nowhere near standing, crawling or walking. She doesn't even roll, she scoots around on her back which has left an almost bald spot. It's kinda cute. Right now she is on 50 cc/hr for 20hr/day. This equals about 660 calories. She needs about 750/day. Her doctor typically switches tubefeeders to pediasure at 1 year and she is only a month away so she'll be switching within the week. The good news is Pediasure is covered by insurance so we'll have a copayment but better than the hundreds of dollars on formula each month! So, she'll start on Pediasure 3/4 strength, 50cc/hr for 20 hours. This equals 750 calories/day.
Some more good news. Emma is FINALLY on the growth chart. WOOHOO. She is 25% in height and 3% in weight (skinny minny), as far as height/weight proportionate she is 10th%. Not too shabby! Her weight goes up and down but the overall curve is upwards so we're thinking positive.
On a semi blah note, Emma is still not tolerating any solid foods. She has shown a lot of interest in eating as does really well, but anything except water makes her reflux flare up bad. We now are not even guesstimating a date to take out her tube. We will focus on just getting her the nutrients she needs to grow and meet milestones. Her prevacid is being upped to 1 solutab, twice daily. We're also throwing carafate back into the mix. Hopefully this will help keep her reflux at bay so we can introduce more solids and eventually wean from the tube. Like I said, we're not really aiming for a date other than "before she starts Kindergarten", according to the doctor. I don't mind the tube at all. It makes it a lot easier to not even think about it or to not dwell on it.
So, overall it was an okay appointment. We go back in 6 weeks again. On a side note, the new pump we got doesn't work right so it has to be sent back and an infinity needs to be ordered. So, we have the pet pump for a few more weeks. It never ends. lol.
5 comments:
As Emmie-Roses mommy would say... You Grow Girl! lol
We talk about you guys all the time (all good stuff). We can't wait to see the Emma Walking Pics at some point.
Our prayers to everyone in your family! We are praying that everyone gets better soon.
Love,
Chris and Stephanie
I am so glad to hear she is on the growth charts now! I think about Emma and you often and am always glad to see an update.
Thank you Chris and Stephanie. I can't wait to see walking pics, but those are probably a ways off. The cerebral palsy diagnosis is mne step closer to being confirmed. She'll have an OT evaluation and possibly see the nuero and an ortho after that.
Well the good news is she is gaining weight!! I hope it's all up hill from here. :)
A thought on her eating... when you mentioned CP it sparked my memory. My daughter had a very hard time eating. She was always just a hair off of the weight mark that would have gotten her tube fed. As she got older new issues creeped up and during a sleep study (she was 3 years old) it was discovered that she had a floppy airway, most likely part of her body that was affected by CP. The doctor suggested that we have her tonsils and adenoids removed to give her more room, making it easier for her to breathe and eat. I refused.
When she was 5 years old she started having constant infections in her tonsils. We saw a new ENT (we had just moved to a new state) and he explained to me that it was time to take the tonsils and adenoids out. The benefits were now outweighing the risks.
In the few months following the surgery she gained 6 pounds! She doesn't choke nearly as much and her reflux is better (no one has figured this one out yet).
Just a thought. I can fully understand where you are at right now!
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