"Failure To Thrive"

Today was the big appointment. Good news: Isla grew a ½ inch in a month. She is now 26 inches long (5^th %). Bad news: She has not gained ANY weight, not even a single ounce in a month and a half. Actually she probably lost weight but she had not had a bowel movement yet and after her weigh in she had 3 wet diapers in an hour. She weighs 13 pounds 8 ounces (not even on the charts). She was labeled as “failure to thrive” or FTT. We have a referral to see a different pediatric gastroenterologist- which is on Friday October 8^th. They will do a scope with a biopsy. We also have a referral to see an endocrinologist. My doctor will make an “emergency” appointment after Isla’s scope results are in.

There really could be a number of things wrong with her- we already know she has severe food allergies and colitis. On the gastro side it could be EE (Eosinophilic esophagitis), EC (esophageal colitis) or EG (esophageal gastritis). I do not yet know much about these conditions except that they all can cause malabsorption and are treatable. On the endocrine side it could be a growth hormone issue, a kidney problem, or a gland disorder.

We are in the process of figuring all this out. There will be many more doctors’ appointments to come and unfortunately more tests and procedures. The pediatrician urged me to go on FLMA and I already called my work to hopefully start the process- keeping my fingers crossed.

On a lighter note- Isla’s is on the high end of her age group when it comes to vocabulary! She says Mama, Dada, Book and Doggie! Well sometimes she says Boogie instead of Doggie! And she says all kinds of things that are unrecognizable. Developmentally she is doing great- she is crawling, sitting, pulling herself up to standing and walking along furniture- she can also stand unassisted for several seconds.

Isla also had her appointment with Hanger (the helmet people) and she is right on track! She has made great improvements and will hopefully get her helmet off by her first birthday (12/22).

*To be quite honest I am a bit overwhelmed with all this. I haven’t had time to digest it all yet, hence why this post it more factual and not so emotional. I just can’t gather my thought very well right now.

Not growing

I know I have said in the past that I LOVE my pediatricians and I really do. Isla sees 2 doctors- Dr. G and Dr. D. They are both Moms of toddlers and each work part time (they split the week). These women are truly amazing. I have so much in common with then (besides the doctor thing). There is also a medical assistant there named Kayla- she is the best. I am so lucky to have these women in my corner. They are a perfect match for the way that I parent. With all that is going on with Isla lately I can’t count the number of times that I have called or come in literally in tears- and they are always right there with me to comfort and reassure me. They are incredible- so supportive and encouraging.

On Thursday Isla had a pediatrician appointment. This time we saw Dr. G. We always start each appointment with a height and naked weight measurement (because of Isla’s weight issues). I am always so worried at this point. We put her on the scale and I nervously watched Kayla move the ticker on the scale until it was level- 13 pounds 8 ounces. My heart sank. In 9 days Isla had not gained a single ounce. We walked back to the exam room to meet Dr. G. We talked about all sorts of things (Isla’s diet, my diet, her chronic constipation, the GI appointment). She said one thing that made me feel so much better- she said it is not my job to make Isla grow. I am doing all that I am able to do- nursing her regularly, feeding her solids 3 times a day, giving her probiotics. She said not to blame myself and that I am doing a great job. I love her! We made a plan that if by her 9 month appointment (the end of this month) that if she hadn’t really grown then we would aggressively investigate. She will likely send us to a different pediatric GI to do an endoscopy on her. So far all of her labs have come back normal but there is always more tests we can do. I asked her what she thinks could be going on with her and she said it could be a number of things (a rare growth disorder, a kidney function problem, celiac disease, or she could just be super tiny). The thing is- Isla is doing great in all other areas. She has great brain development, she is meeting or exceeding all of her developmental milestones, she is alert and happy and super active- she is just not growing. She is at the extreme low end of the charts (like 0.5%)

So here I am, trying not to worry. Anxiously awaiting September 30th. I hate waiting. I am trying to remain positive but also preparing myself for what could be. Keep your fingers crossed that she grows. I will update after her appointment.