Anyway, your appointments this week went really well! The pediatrician was pleased with your progress and that you seem to be so much more relaxed. We went to the Developmental Clinic yesterday and saw the developmental specialist, speech therapist, physical therapist and dietician - it was good to see some familiar faces (the clinic is part of the hospital) but also really weird to be back! The developmental specialist said everything looked like it was going well. There was a hiccup in the paperwork for your stroller but they are getting that taken care of. It was submitted with a bunch of other approval requests that all have to be repeated atter six months and Medicaid denied the chair if it was only going to be used for six months. Sigh. Yay for paperwork misunderstandings.
The speech therapist wants us to start trying the speaking valve again when you are doing your one hour "sprints" off of the ventilator support. It will help you start working your vocal chords more but will also help with the pressure needed to swallow properly. You're scheduled to go in for a swallow study June 30 so between now and then we really need to be working on your oral motor skills and swallow ability. You do fairly well with controlling your saliva (not counting the excess drool that comes with any testing baby) but they don't know if you will be able to handle much more than that so time to get to work! The swallow study will help us decide when / if we can start introducing any purée foods into your diet or even attempting bottle feeds.
We didn't get to see our regular PT because she was out today so I was kind of disappointed about that, but we will hopefully get to see her next week when we go in for the pulminology visit because you need some new feet splints. Your legs are too chubby at the top of them now...and they stink. The PT we did see showed us how to do a modified tummy time exercise to start working in that muscle group again and wants us to start doing that five times a day for as long as you will tolerate it (hopefully 5-10 minutes each round...) as well as continue your stretches. Overall, you are doing a lot better than before with your reaching, stretching, strength stuff.
Lastly, the dietician said you have gained an average of 80 grams a day since about a week before discharge. Normal weight gain for a 5 month old is 10-15. WOW. They kept you on the excess calories to go home just to make sure you had enough energy to make the transition and get settled in but now they want to back off of that and see how you do on just breast milk. Up to this point I've been having to fortify your milk with formula so that it was 24 calories an ounce, regular breast milk averages about 20 calories so it's a pretty big cut but I'm glad to not have to use formula anymore! They'll check your weight again next week to make sure that progress doesn't nosedive. You went from the 35th percentile in weight to the 50th!
Keep up the good work! Hopefully next week's pulminology appointment goes just as well as the developmental appointment!
Sweet Daddy's Girl ... keep up the good work Darlin'. Hang in there Mama Moseley. No doubt nght shift with Lexi is different! There are numbers to monitor & a trach to keep clear, feeds to begin every three hours & unhook when completed, beeps & bells & whistles that go off all night long. Two days of traveling to doc appointments doesn't allow for naps in the day either. The amazing part is your faith that everything is as it should be ... testament for us all.
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