Tuesday 10/30

Life goes on for all of us, living at the Children’s Institute. This weekend brought some colder weather, but we were sure to get Judah out for a couple of walks before the rain came. He loves wearing his fuzzy sweatsuit his gramma bought him, and looks absolutely adorable in it. With the colder weather came the wrath of Sandy, no, not gramma Sandy, she is always nice to everyone, but a not so nice “superstorm” that caused a lot of problems for a lot of people. We wish everyone affected by this hurricane our thoughts and prayers, and hope they can all return to normal life soon with little or no damage and interruption.

The weekend also brought a lot of playing, eating, and sleeping, as Judah spent it with daddy while mommy got to go home and rest a little bit. The weeks have been wearing us down a bit, but we continue to stay strong and positive for Judah, as he needs our strength just as much now that he is really making great progress. Yesterday was Judah’s 7 week birthday, which also meant 7 weeks of sleeping in hospital beds for mommy and daddy.

Week 7 of life brings a few more tests and continued progress for little baby bear, Monday he had follow up appointments with his Cardiology team from Children’s Hospital, and another Echocardiogram to look at his heart. All of his tests came back just as well as they did when we were discharged from the hospital almost 2 weeks ago. His heart is strong and some minor expected issues aside didn’t give any cause for concern. Today he had another “swallow test” to see how his breath-suck-swallow reflexes are strengthening, and he passed with flying colors! He has come so far since his last swallow test, and this time he showed no signs of aspiration, or fluid going into his lungs when he swallows. This means that we can begin feeding him directly from the bottle more often, and the therapist has also reduced down to nothing the amount of rice cereal we had been adding to thicken up his formula. Hopefully this thinner formula will make it easier for him to swallow and he will start taking higher volumes of breastmilk formula by mouth instead of through the feeding tube. This was one of the last major hurdles for Judah before we can look forward to setting goals of taking him home. We will still probably spend a few more weeks at the institute while they get the volume of his feedings up and monitor him to make sure he continues gaining weight, but this is an excellent step for all of us.

Wednesday we will have a meeting with the doctor and therapist team to go over Judah’s progress over the last couple of weeks since we came to the Children’s Institute, and hopefully we will all be able to come up with his next set of goals, and outline a plan and timeline to get all 3 of us home, or at least to an outpatient program. We continue to look forward to the day we can finally take our son home and begin moving forward with our own lives, and thank you all for your continued love, thoughts, and support. It truly means the world to us.

Our love
J-N-J

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