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Apollo Jones…

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…he was skin and bones…

…in fact he was remarkably thin…

{If your’e familiar with the musical CATS! you may recognize the variation on the lyrics which actually go: Bustifer Jones, he was not skin and bones, in fact he was remarkably fat…but we like to sing our verision to Apollo}

Apollo went to see a naturaopathic doctor on Monday (one who happens to be my midwife, so he is already a patient of hers). My goal is to get him in top health…he deals with so much as it is. I missed church once again on Sunday. He was up every two hours in the night the previous two nights. Therefore, when he fell asleep half an hour before it was time to leave, I was not waking him up. Sunday night, he was only up once (at 2 am) and then last night was up from midnight until 2 am. Some days I think he is trying to slowly drive me mad with sleep deprivation…and days like today, I feel like I am going mad. But I digress.

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Basically, the naturopath caught up on this little guy’s eventful life, examined and weighed him. I asked how concerned she would be about his weight if I brought him in and he had no other issues. Her answer was, “I’d be very concerned. He’s just too small. Have they considered something may be wrong with his heart?” That has crossed my mind of course. Respiratory issues combined with poor weight gain…so far his heart sounds fine…she agreed that the pulmonologist is likely waiting for Apollo to get big enough to do the bronchoscopy…She agreed that he is “working” for each breath. She pointed out not just the slight retracting but the veins visible on the sides of his abdomen which are “atypical” and also a sign that he’s working to breathe. Poor little guy.

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While I was there she went ahead and called down to Seattle Children’s Hospital to see if they had the pulmonologist’s report ready. But they didn’t. It’s been two weeks! I think the pulmonologist feels like we have a “plan”…it’s just he wasn’t very clear to me what the “plan” is.

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At any rate, she gave me a list of things to try with him. Jo Abair, you’ll be happy to know she reccomended slippery elm! He takes vitamin D and a probiotic right now. She recommended trying goat’s milk…some children with sensitivity do  fine with it, others don’t. There’s nothing to do but try.

In the meantime it is so hard to watch him spend so much of his time miserble. Coughing, heavy breathing, not eating, not sleeping, crying. It makes this mama sad.

 

 

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17 Comments

  1. Shawn

    So sorry Renee, I know it is so frustrating to be the mama and not get to the answers immediately! Know that lots are praying for you guys.

  2. Linda Up North

    Have you thought about the Mayo Clinic? They are all about “team approach.” I have had two kids down there for serious issues. They schedule all the possibly pertinent appts, then they have a team meeting and go over all that each have learned/think. Then they have a team meeting with you and let you know what they have come up with, what a possible plan might be, etc.
    Just and FYI …
    I have had your little guy in my prayers…

  3. kim

    has anyone suggested a genetics consultation for Apollo? I ask because there are ‘inborn errors of metabolism’ as well as ‘congenital immunodeficiency syndromes’ which can present with these type of myriad signs and symptoms–pulmonary/ear infections, poor weight gain, food intolerances, etc. Those of us who are generalists tend to think of the more common possibilities first, but when those don’t provide answers, we have to wonder about more rare entities. Genecists are excellent at taking these myriad symptoms and teasing out the rare possibilities. They have very broad AND deep funds of knowledge.
    I also wonder about a vascular ring or sling. This is a type of congenital structural cardiopulmonary disease inwhich certain vessels wrap themselves around lung or esophageal structures where they shouldn’t be. They can cause noisy breathing.
    Just more things to ask your providers about…
    We’ll keep praying

  4. kris

    Makes me sad and I don’t even know you guys! Praying for your little guy to put some weight on, sleep better and hopefully do the test to see why his breathing is so labored.

  5. lizz

    Hi,
    I am praying for Apollo. I have just found your blog so I am catching up. I have 3 children ages 5,3 and 1 all adopted domestically. I know Apollo sounds to have many health ailments. All that aside he doesnt look so tiny in the pics you take. Maybe it is your excellant skills. My son just turned one yesterday and he weighs 17 lbs. He looks so much tinier than Apollo. He is less than 3rd percentile and no one blinks an eye. He doesn’t have any other issues of course. I was curious at how much Apollo weighs.I think he is 18 months? I hope not being personal. I am praying for you and your beautiful family.
    Liz

  6. liz

    oh I wanted to add he was 5lb 7oz at bith and as a Nurse and DH a Dr we know it is typical to triple birth weight by first birthday. Maybe Apollo stopped gaining weight? I will try and catch up:) My son also has been walking since he was 8 months and burns a ton of energy. he runs actually! Oh and he is of Indian ethnicity,

  7. Wyattzoo.blogspot.com

    I still pray for him (and you!) daily! I hope you find real answers and solutions soon. But seriously, if he has to be a sick baby, at least he’s an adorable sick baby. That face makes it worth getting up every two hours (even though I know how much doing that with a one-year-old sucks).

  8. Elena

    Poor baby 🙁 It’s so hard to see a child struggle, but it’s got to be that much worse when you don’t even know what’s wrong or how to help them more than just minor symptom relief.
    My oldest son had breathing problems too, in his case it was because he was small and thin, much like Apollo, and he had asthma, which he’s since grown out of. But we found he really benefited, strangely enough, from a toddler gymnastics class we had him and his sisters in when they were all little. We think the light stretching and limbering up of his thoracic region helped it to not be so tense and rigid, and gradually increased his strength and lung capacity without strain. When we didn’t have him in gymnastics, we had those morning exercise radio tapes that are supposed to help older people with low/no-impact stretching and joint decompression and those seemed to work just as well if we did 15-20 minutes with him twice a day, in the morning and early evening before bed. Maybe some light stretches and careful decompression might give Apollo a little relief? Just a thought, not knowing the true cause of his symptoms, but it certainly helped my son.
    Keeping Apollo and your family in my thoughts, and hoping for a solid diagnosis.
    – Elena

  9. Renee

    Liz- Apollo was a whopping 8 pounds 12 ounces at birth! He gained fine until 4 months. He was 14 pounds exactly at 4 months, 5 months, 6 months and 7 months…it was around that time that we realized his noisey breathing wasnt from the c-section, wasnt from a cold, etc. He just barely doubled his birth weight by his first birthday. I too had a 17 pound 1 year old, but she was healthy, happy and ate and slept just fine. Apollos weight is actually the least of my concerns, which is why I was so very frusterated that the pulmonologist seemed so focused on it. Apparently he needs to get bigger to have a tracheoscopy done…Apollo is almost 14 months and is just over 18 pounds. He has crackly lungs, stridor, retracts when breathing and doesnt eat or sleep well.

  10. joabair

    I am so pleased that he is on that! I have seen it work time and time again with human babies and livestock…not to compare honestly! But a mammal is a mammal and I know human herbology-I have used it for 3 years on my baby livestock and it ALWAYS works the same way with each herb. Slippery elm has been the best for both respiratory and weight gain. I will be praying for Apollo and your whole family daily.

  11. Robyn

    What has he had in the way of a cardiac workup? I would worry a bit about cardiac abnormalities that cause shunting and increased blood flow to the lungs, which could cause poor growth and (maybe) respiratory symptoms. Would not necessarily cause a heart murmur depending on the lesion. An echocardiograph would be a good noninvasive way to address it.

  12. Shalome

    I have been meaning to ask; have his thyroid levels been checked? He could have a hyperthyroid. That can cause heart issues, weight issue and then lung issues. The vitamin D could help a hyperthyroid. But it would be interesting to see if his thyroid is working well. Normally they don’t test kids for hyperthyroid, but it is something to think about.
    My heart really goes out to you. Watching your child struggle is so hard.

  13. liz

    I’m curious if he has had an MRI or CT scan done of his chest so the docs can ‘look inside’ without needing to scope him. Maybe even a PET scan?
    My mom used to be a NICU nurse and when I told her about Apollo, she immediately thought CF and when I told her that it was ruled out, she was baffled.
    It is possible that is it something really rare. I was reading a story about a girl, named Lizzie Velasquez, who has a rare syndrome that does not allow her to gain any weight whatsoever. She has zero body fat. Only she and one other person have this in the entire world. Her syndrome was thought to be caused by minimal amniotic fluid and she was born 4 weeks premature.
    Unfortunately, what I think I’m trying to say is that since the ‘typical’ stuff has been ruled out, this may be something more sneaky and mysterious. I certainly hope not though!
    I hope you guys can figure out what’s up with your beautiful little boy. Best of luck, you’re in my prayers.

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