5th percentile

by Kayte

Lola had another great 6-month check up at the endocrinologist today. She gained another two pounds which finally put her over the 30-pound mark for the first time, and grew another 1-1/2 inches. She’s in the 5th percentile for weight and the 31st percentile for height. I remember we were so unsure when we started this grown hormone journey, but Lola is doing so well and I’m glad it was the right decision.

 
Height: 41.5 inches
Weight: 31.7 pounds


30th Percentile!

by Kayte

Lola had her six-month checkup with the endocrinologist today. She gained another 2 pounds and grew another 2 inches which puts her in the 3rd percentile for weight and the 30th percentile for height! Needless to say the doctor was very happy with her progress.

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They also did an x-ray which put Lola’s bone age at 2.75 years. According to the doctor this is actually a good thing because it shows that she still has a lot of potential for growth. If Lola’s bone age matched her actual age it would mean that she was maxed out at the 30th percentile, but because her bone age is nearly 2 years behind her actual age, she still has room to grow.

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I never noticed this on her chart before but I think based on our (parents’) height the doctor has her natural growth potential (stature) highlighted at the 50-80% range between 5’5″ to 5’7″.

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Height: 40 inches
Weight: 29.5 pounds


20th Percentile!

by Kayte

We’ve had a busy week at CHLA this week. Infectious disease on Monday, and endocrinology followup today. In the six months since our last visit, she’s grown another 2 inches and gained over 2 pounds. She is now in the 20th percentile for height, and in the 1st percentile for weight – which puts her ON the growth chart for weight for the first time ever! Needless to say, the doctor is very happy with Lola’s progress. No bloodwork or x-rays today. He increased her growth hormone dosage and we’ll be back for another followup in October.

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Weight: 26lb 14oz
Height: 38 inches


12th Percentile!

by Kayte

Lola had her six-month followup with the endocrinologist. In the year since we started growth hormone, she has grown 5 inches and is now in the 12th percentile for height.  She is still a peanut on the weight-chart (25-1/2 pounds and 0th percentile), but the doctor confirmed that once she catches up height-wise her calorie consumption should shift toward affecting her weight too.

While at the hospital we also did a bone age scan (x-ray) which showed that her skeletal structure is comparable to a 2-1/2 year-old. So she’s about a year behind and we still have a ways to go, but the progress thus far is amazing.

Grow Lola Grow!

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Weight: 24lb 8oz
Height: 36 inches


Growth Chart

by Kayte

Lola had her 3-month checkup at the endocrinologist today and she is finally on the growth chart! For height at least, if not weight. Since our last visit she has grown another inch and gained a little over half a pound. That puts her in the 3rd percentile for height (still at 0% for weight). The doctor said it is normal for the height to increase faster than weight – all those calories are being used for growing, not gaining. Hopefully once Lola’s height has “caught up” she will start packing on the ounces. She has been looking SO darn skinny to me lately, I guess because she’s getting stretched out vertically. She’s grown into 2T sizes length-wise, but her pants barely stay up around her waist. If it weren’t for those bulky cloth diapers nothing would fit. Not sure what we’ll do when she’s potty trained!

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Weight: 21lb 13oz
Height: 34 inches


Two Inches

by Kayte

Lola had her follow-up with the endocrinologist today. In the three months since we started growth hormones, she grew 2 inches and gained 1-1/2 pounds. Based on our last pediatrician appointment we were expecting a good report, but it’s always nice to have it validated by the medical professionals.

The 2 inches is an especially big deal. Normal growth for toddlers is 2 inches per year — and she grew that much in three months! This means she is responding perfectly to the growth hormone treatment and exhibiting what the doctors call “catch-up growth.” Things should slow down eventually (they don’t expect her to grow 8 inches in a year) but until then they said she can’t grow too fast. She’s still not even on the growth chart, so we still have a ways to go.

We also did some bloodwork while we were at the hospital just to make sure all of her internal levels look good. Should get the results in 1-2 weeks. In the meantime we’ll just keep doing what we’re doing. We will have follow-up appointments every 3-4 months until the doctors are confident that everything is stable, then every 6 months after that. Until she hits puberty. We definitely have a long road ahead of us, but at least we know we’re on the right one!

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Today was also the first time Lola was able to stand by herself on the big-kid scale instead of having to lie down on the baby scale. Big girl all-around.

Weight: 21lb 3oz
Height: 33 inches


Growth Hormone

by Kayte

Today was Lola’s first growth hormone injection. We went to the hospital where we spent 2-1/2 hours learning how to properly mix and inject the medicine. After many, many practice pokes on a rubber model, it was finally Lola’s turn. She was so brave and didn’t even cry. I hope the rest of her daily shots go as smoothly.

We received the shipment of medication in the mail a few weeks ago, and I have to admit it was pretty intimidating. We got a big insulated box with the special injection pen and a one-month supply of medicine, needles, alcohol swabs, bandaids and a sharps disposal container. The pharmacy will be sending us a goody box like this every month. The medicine itself has to be refrigerated at all times, which definitely has some implications on our lifestyle. It sort of took me a step backward closer to our high-equipment NICU days, although I’m sure as with everything this will just become another part of our new normal.

The nurse took baseline measurements of Lola’s height (31.5″) and weight (19 lb 13oz) and we have a follow up appointment in 4 months. The doctor will be able to tell if the growth hormone is going to be effective or not within that timeframe. Crossing our fingers. Grow baby grow!

Weight: 19lb 13oz
Height: 31.5 inches


Small for Gestational Age

by Kayte

Lola had her 6-month follow up with the endocrinologist today. She weighed in at 19lb 3oz (finally!) and measured 31-1/4 inches long. When the numbers were plotted, we saw that she’s still not even ON the growth chart for height and weight. They also did a bone age scan (x-ray) which showed that Lola has the skeletal structure of an 18-month old.

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At our last appointment the doctor conducted a series of lab work, all of which came back normal. This ruled out any specific medical causes for Lola’s tiny stature. So the official diagnosis is Small for Gestational Age (SGA). In Lola’s case the diagnosis is idiopathic, meaning there is no clear root cause of the problem.

Most kids born SGA “catch up” on the growth chart within the first two years – like Max. The small percentage of kids who don’t catch up by two almost never catch up later  without medical intervention. The treatment for SGA is growth hormone (GH) therapy, which would involve a daily injection of GH until Lola reaches puberty.

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Looking back on the blog I realize I never really posted much after our initial consultation, but we’ve done quite a bit of research and have had many discussions in these last six months. We were initially hesitant to take what seems like such a drastic step, but the risk is very low compared to the life-long benefit, and Lola needs every advantage she can get. Today’s visit was just quantitative confirmation that Lola hasn’t caught up by age two, and statistically she qualifies for GH therapy.

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If you’re interested in reading more, the doctor gave us two great resources to check out: MAGIC Foundation and Human Growth Foundation.

Weight: 19lb 3oz
Height: 31.25 inches


Endocrinologist

by Kayte

We finally had Lola’s long-awaited appointment with the endocrinologist today. He read through her history, did a physical examination, and ordered some bloodwork. Similar to the GI he wasn’t overly concerned with her case, but overall he does think she should be bigger than she is.

The bloodwork will tell us more about her hormone production, which can be adversely affected by hydrocephalus. The results will let us know whether we’re on the right track with hormone therapy, or if Lola would be in better hands with the GI or a nutritionist. We’ve been told this doctor is pretty conservative so we’re confident that he won’t prescribe something she doesn’t need.

The appointment was at CHLA and I was on hyper germ alert after reading about how bad the flu is right now. The article said flu cases at CHLA doubled as of Friday, and here we were walking into it on Monday. The parking garage was so full they had attendants stack parking cars. I tried to get Max & Lola to wear masks but that lasted all of about two seconds. Hopefully we got out of there unscathed.


Endocrinologist

by Kayte

We sent Lola’s paperwork to the endocrinologist to set up an appointment. After reviewing her chart, he decided she wasn’t an urgent case and we were given his next available opening in January. It’s a great sign that a specialist doesn’t think she’s urgent, but I’m not sure if my pediatrician will want to wait that long. We’ll see what he says tomorrow.