Apollo Update {Feeding Disorder Clinic}

posted in: Apollo, Special Needs | 3

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Apollo had a pretty big visit to Seattle Children’s Hospital earlier this week. It was an appointment with the Behavioral Health Clinic to evaluate his current eating habits. I was at a birth, so didn’t get to go to the visit, but Chuck took him. The referral for this appointment was made 18 months ago. That’s right, a year and a half ago on of the doctors who saw Apollo decided he needed a thorough feeding evaluation, and he just now had it. Something needs to change with medical care in this country, my friends. A 18 month wait for a FEEDING APPOINTMENT? Ridiculous.

Anyway, prior to the visit I filled out a ten page form about his past and present eating habits and what we “hoped to gain” from this appointment. It’s all a bit confusing me. In the three years Apollo has had his feeding tube, nobody at Children’s has been overseeing it… Chuck said he ate for the occupational therapist who declared everything to be “perfect”. He has all the mechanics in place and enjoys eating. Half of me is thrilled to hear this, the other half is that voice in my head who tells me we’ve been told that before. At his first feeding evaluation we were told that my tiny, failing to thrive, miserable  toddler was simply afraid to eat. We were told then he had the mechanics down. He had no physical issues, except, you know, that heart defect and compressed esophagus no one had noticed yet. Sorry to sound bitter, but when you deal with doctors as much as I do, you come to the very scary realization that doctors are human and make mistakes. Sometimes small ones and sometimes big ones. toddler-doll-carrier-2

We go back next week to hear if they plan to take him on and support him through, what I believe now would be called, his pediatric feeding disorder. As far as anyone can tell, there is no physical reason for him not to eat, but all wean attempts have been a fail. I’m one part excited and one part absolutely TERRIFIED.

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And see this cute little toddler baby carrier? Its called a Cuddle Pack and was sent to me by Colleen from Colleenamareena Quilts. Apollo just loves it! This cuddle pack is very well made and high quality. I can see this Cuddle Pack lasting through several kids. Colleen also makes gorgeous quilts (I’m hoping to buy one in the future)  Apollo loves dolls and loves playing with them. He has several of his own (his favorites are Jonah Boy and Zane) and enjoy’s playing with his siblings dolls as well. Want to hear something funny, though? As much as Apollo loves this Cuddle Pack, and plays with it frequently, he’s not pretending to be the daddy to this baby. Oh, no. He calls this Cuddle Pack his Mech; as in Kai’s Fire Mech: 

  (you may need to click on this affiliate link to see it bigger. You’ll see tiny Kai in giant mech)

It cracks me up. He loves and nurtures and sleeps with his dolls, yet. But give him a Cuddle Pack? And it’s a LEGO Ninjago Mech. 

Hilarious.

Thank you, Colleen for the awesome Cuddle Pack/Mech. 

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3 Responses

  1. Oh Rene–I am so, so sorry. Indeed, the medical system is a disaster. 18 months for a feeding appointment for a little boy who VERY MUCH NEEDS ONE is unacceptable. Here’s my own most recent story to help confirm your opinion. I have a chronic illness and have been in my worst stretch in 6 years. Yesterday, my doc prescribed a new infusion medication to try to calm symptoms and get me ahead of the game. Within 30 seconds of starting the infusion, I STOPPED BREATHING COMPLETELY. No air going in or out, at all. My husband was out of town, but thank God, my mom was sitting right there with me and stopped the infusion. I was breathing again within a minute, breathing normally after a couple of minutes. We went to the ER where they declared my labs and tests (their words) “absolutely beautiful.” Beautiful? I stopped breathing! I’ve been sick for 6 years! They handed me my clothes and told me to go home with no answer or help.

    All of that to say–I agree with you, and I’m so, so sorry that your family has to continue to try to plod your way through this mess just to get the help that Apollo needs. You are very strong.

  2. Have you thought about seeing a behavioral psychologist? I know before in the past his eating issue was due to a physical reason. Even if the doctors didn’t see his non straight esophagus, I did. It seems since his last surgery his esophagus was looking good. I wonder if it is psychological? It would make sense since his first intro was choking. I would be nervous as well. 😉

  3. Maura Spiller

    Hi Renee,

    I love your blog! I am a speech language pathologist, and one of the areas that I specialize in is pediatric feeding disorders. I originally found your blog because I was searching the Internet for feeding tube blogs. I love reading parent blogs because it helps me gain a better understanding of the children and families who I serve. I keep coming back to your blog, because I just love reading about your family, and of course to check in on your little warrior Apollo. What a complicated and sweet little man! I was wondering if you have home health speech/feeding services available in your area? I see my patients at their houses. This way, I can treat the feeding issue where it matters most, at home, and with the family. These kiddos are so incredibly complex. Major medical issues, even after they are “fixed,” effect so much more than the child’s body. Not to mention how challenging and draining feeding disorders are for families/moms. I live in Texas, so I am not sure what resources/services are available in your area. If you are able to get home health services, or are interested, I think it is worth looking into. Anyways, if you ever have any questions or want to reach out, feel free to email me.

    Take care,
    Maura

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