

I am feeling so good about Addy's appointment with the nutritionist today. I'm quite frustrated that we didn't see a nutritionist well before my daughter was a failure to thrive, very malnourished child, but I digress. Addy has been taking in the amount of calories that an infant needs to grow and develop. She is almost 3! Addy was born with significant bowel issues, duodenal atresia and imperforate anus and had a colostomy for 14 months. I have blamed her increased stool due to the duodenal atresia and the anal malformation but nope, it's pretty much nutrition! I am letting go of my anger about this, even though I did ask about her weight loss and lack of weight gain EVERY doctor appointment and was dismissed (until we saw new pediatrician!). It's very frustrating that a child's most important brain development occurs during the first three years of life and my daughter who I believe has a very loving home and parents who want the absolute best for her, she has been deprived and I am sick about it!!! It just goes to show that doctors don't know everything and you just have to keep pushing for your child. I am letting go of the anger and the guilt and thanking God that her new doctor listened to me and pursued more information about Addy's health! All blood work done on the 19th came back normal including the Celiac panel so I am pleased about that! So onto what we are going to do for my angel! She is going to have another blood test to rule in or out food allergies. It's pretty obvious that she probably has a milk/lactose allergy but the nutritionist wants confirmation since any food allergy could impact what sort of formula we can give her. However, she is starting a new form of "milk"!!! She is going to start taking Vital Jr. . She will continue having four feedings per day, but they will consist of 3 8 oz. feedings and one 4 oz. She will also be given a bolus of 4 oz. of water per day as well. She is also starting her on a Probiotic. "Probiotics" refers to dietary supplements or foods that contain beneficial, or "good," bacteria that are similar to those normally found in your body. Although you don't need them to be healthy, these microorganisms provide some of the same health benefits that the bacteria already existing in your body do — such as assisting with digestion and helping protect against harmful bacteria. I can't remember the name of the one she is starting on but I'm excited about what it may to help Addy. I've researched them before but since she is medically fragile I have been hesitant to try any on my own and naturally old doc didn't support them. So hopefully we will see a much healthier little girl! I am amazed at all she is doing lately, she has about 30 signs now and is actually crawling. Her hair is also amazingly beautiful! I can only imagine what she's going to do when she is properly nourished!!!
FYI, Jake's baseball team won the championship game last night! His team was undefeated and they all got t-shirts! Way to go Jays!
7 comments:
This is Joyce. Prayers, hugs and encouragement. Sometimes the only thing you can do is shake her head. It is baffling. So glad you found a new doctor and are on the right path now.
I'm so glad you figured it out. Just think how she'll thrive now. P.S. You're a great mom!
You can only go forward, no back. At least now they have things fixed and hopefully she'll start packing on the pounds.
She is such and angel and you are the best mom ever.Sounds like a great plan and I'm only sorry that it has taken this long to get there.Crawling and signing,what a girl?
I'm so glad you had a good appointment. It is so frustrating when you have to push doctors to take adequate care of your children. I have had this experience before myself and found it so difficult.
Addy is looking as cute as always!
I am so glad you are on the right track now. Don't go over it anymore you'll make yourself crazy. The good thing is it was caught and she'll be gaining weight now.
And Addy's hair is gorgeous. I noticed the pic right away. Crawling and signing, she's doing great!
I'm so glad that you're getting help for your daughter from a nutritionist - however - from my experience working with hundreds of families of children born with imperforate anus it is very likely that your first conclusion is also correct. Is your daughter on a bowel management program? Most children born with IA are. The more complex the type of IA, and the more additional diagnoses there are, increases the possibility that some intervention is needed.
My daughter, Amy, is now 20 and was born with VACTERL Association, including IA. For the past 9 years I've been the volunteer executive director of Pull-thru Network (PTN). I have also been a member since Amy was 5 (and wish I'd found PTN earlier).
I would love to set up a courtesy PTN membership for you so that you can be in touch with other families who are dealing with the same challenges and so that you can have access to all of the medical and support information that is available.
Please contact me and I will set it up for you ASAP.
Best regards,
Bonnie McElroy
www.PullthruNetwork.org
PTNmail@charter.net
205/978-2930
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