Our history

Henry’s early history was not an easy one. I had to deliver 4 weeks early due to the risks involved with the pre-eclampsia I developed my second trimester.  He eventually had to be delivered by c-section when my induction attempt was unsuccessful.

When he was born, right away they noticed breathing problems and a very low oxygen saturation level. This sent him to the NICU where a heart murmur was also found.  His breathing issues eventually came under control and his murmur was being caused by an Atrial Septal Defect and a Ventricular Septal Defect. He also had a small mitral valve prolapse. This was a lot for us to take in these first days, so we were surprised when we had to add jaundice to his already long list of ailments. Despite all of these overwhelming turns of events, Henry spent only 3 days in the NICU and he proved himself to be a fighter. We brought him home on day five, and soon his jaundice began to clear.

Henry had a hard time latching on during breastfeeding. When he ate, sometimes milk would come out of his nose. He would arch, and scream and seem really uncomfortable unless being held upright. I thought these were all normal things, after all this was my first child. I was still learning. So it was easy for me at first to trust and believe what the pediatrician was telling me : Henry has colic. Great, every new parents worst nightmare. I’d heard of it but couldn’t be prepared for it. Especially when it was not actually colic, Henry suffered from severe GERD (gastro esophogeal reflux disease). It was classified as silent reflux by a pediatric gastroenterologist when Henry was four months old. It was a long four months. We also found out he had food allergies…this information came about from testing his stool, as well as an elimination diet. It seemed the food allergies were aggravating Henry’s reflux.

We eventually got his reflux under control with Zegerid, after all other typical meds failed. We are so thankful for this drug. We had some good months with Henry where we believed the worse was behind us and then we realized he was missing his milestones, speech being our main concern. It wasn’t long before we realized he had Childhood Apraxia of Speech. It’s more than two years since his diagnosis and hours and hours of therapy (averaging 4x a week) and he is doing fantastic with his speech and language development. We know we have other challenges ahead, possible with reading and writing, but we are ready to tackle them.

In early 2012, Henry was also diagnosed with epilepsy. So a new journey begins while we try to get this beast under control and give Henry the best life possible. Stay tuned….



2 thoughts on “Our history

  1. My daughter also had serious problems as a baby, but it was all in the form of SVT…which was life threatening for her untreated, but we didn’t know about it until we took her to the ER for vomiting and she was in cardiac arrest. She never once latched on…

    God bless your apraxia journey!!

  2. My son Henry was born a few weeks early but also had to be held upright or he would scream. Since he was my second child I thought his speech delay was normal but he was diagnosed by 3 years with Apria of speech (after fighting bcbs for months). we took him out of speech for Middle School but shortly after that started “passing out”. He is now 16 and has been having seizures since he was 13 (although we did not know at the time). How common is it to have apraxia and seizures? I wish someone would have mentioned it when he was young because he went undiagnosed for years and that is not good.

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