We have a lot to catch up on. And I’m not just talking about the fact that this is the longest stint away from the blog I have ever made since it’s inception. I’m really talking about our Jonah.
At his worst Jonah:
- lost over 5 pounds
- stopped eating for days
- stopped drinking for days
- Vomited everything he did try to eat, even though it was never anything but a puree
- was banging his head all day
- was screaming all day, thrashing himself on the floor
- was constantly sick with an ear/sinus infection from overproduction of fluids from out of control reflux
After being put under a special allergy-friendly anesthsia (who knew anesthesia was made up of egg and milk?!) to diagnose Eosinophilic Esophagitis (EE) by doing multiple biopsies on Jonah’s esophagus, we got on a new medication and were sent home on our way after three, long days. Only time would tell if it would help and waiting for biopsies to come back positive would let us know how to proceed.
The problem with being in severe pain for months on end in Jonah’s short lived life thus far means you don’t have the energy or the desire to learn new developmental skills. He has fallen behind on speech, on walking, and especially on food consumption.
The fabulous news is that one week after being discharged and on new medication, Jonah gained 1.2 pounds. The very first weight gain since he turned 9 months old. He started eating and drinking again immediately, screaming all day was reduced, and now I can’t keep enough food in the house for him for the week because all he wants to do is eat now!
We will be working hard for the next six months to get him to where he needs to be developmentally since he has lost out on some valuable time. He will be doing Occupational food therapy to get him eating more textures without choking or vomiting, Physical therapy to get the low muscle tone in his trunk up so he is able to really start walking on his own, although he gets better every day the more we practice. We will also be doing Speech to get him expressing more, but lucky for him Mommy is his SLP probably too often.My background being in Speech, I never in a million years thought I would the mom on the other side of the therapy table. It was a numbing experience and it’s still one I digest daily because you are so blind to things that are second nature as a practitioner when you are the mom of your child who is struggling. Regardless, I’m thrilled he is cognitively intact and that he will catch up quickly now that he isn’t in pain.
He is also working closely with his Allergist where just this past week we diagnosed two new allergies, 14 total,(rice, carmine) that have a delayed response. This means that he doesn’t have the same type of reaction you would expect when he eats them (hives, anaphylaxsis, eczema, etc.) but consuming these things over time impact the amount of EE found in his esophagus as time passes and will do a number on his digestive tract making it hard for his immune system and absorption of nutrients to operate as they should.
As you can tell from pictures, Sadie has taken on such a helpful and sweet role with Jonah in helping out with feedings since he loves to eat for her and being his biggest cheerleader while he learns to walk. She has done so well with often times having to take a back seat while we have tried to figure out what was wrong and give him the attention he has required. She’s been working hard every day asking and reciting all of his allergies so she can help tell people what her little brother can and can’t have to eat. She’s so mature sometimes, but we can see that life has required it too. We’re so proud of her.
Since getting him on his new treatment plan he is:
- Eating all day long. I think he is making up for lost time.
- Eating new textures. Before he would only eat puree, if that. Crunchy things would be gagged and thrown up immediately, but not anymore.
- Gaining weight. In the first week out of the hospital, he gained 1.2 pounds!!!
- Interested in walking and is able to take 8-10 steps unassisted, though still prefers to hold our hands.
- Banging head/screaming fits have diminished. This will take a while to deal with because now it’s a learned behavior for his frustration and he doesn’t have many words to tell us when he’s angry.
- No more writhing in pain!!!!
- Sleeping through the night.
- He has a playful, rambunctious, silly side we see more and more every day and many more smiles than ever before now that he isn’t hurting.