Monday morning we took Verity in to see our pediatrician at the military health clinic. I LOVE Dr. T, who has seen most of our kids during our time at this assignment. He is so compassionate and practical! I had taken Rhema to see him for her 15-month well-child appointment soon after we got Verity's diagnosis last fall, and I ended up in tears in the exam room asking Dr. T what kind of support they could give us if we were able to bring Verity home. His response at the time was so encouraging and reassuring! We had touched base with him last week via the NICU staff, plus Ted had met with him in person during his TriCare runnings around on base, so Dr. T was well aware of how things were going with Verity after her birth.
Our appointment was so incredibly positive. Verity had gained weight and was tipping the scales at 6 pounds, 1 ounce (up from 5 pounds, 12 ounces the night before we were discharged). Dr. T was practically bouncing up and down, he was so excited to see how well Verity was doing! He literally could not keep from grinning as he said, "I usually try not to be overly positive in times like this, but when I look at her and all her stats and how well she's doing--it's really hard for me NOT to be super positive about her!" Oh, happy day! He answered the questions we had, talked us through our assignment transition process, and noted the case worker would meet us next week. He also wanted to schedule us to come in next Monday so he can have an opportunity not only to check up on Verity but also see how we as parents will then be coping with everything after having some time to settle in at home. He noted that we will have plenty of appointments to keep us busy and didn't want to add to our stress, so he won't make us come in randomly--however, we can say the word and come in anytime we feel we need to. And of course he wants us to do the normally scheduled well-baby appointments.
I'm starting a list of questions to ask him at next Monday's appointment, to include whether we can try continuous feeding at night to allow us parents a wee bit more rest. I'd also like to know exactly what evaluations she will be receiving in the coming months. Here's what I do know...all these appointments were scheduled on our behalf before we even left the hospital:
29 March = consultation with orthopedics
19 April = echocardiogram, immediately followed by a consultation with cardiologists
23 May = audiology testing with possible additional follow-up immediately after initial testing if further tests/info needed
19 June = comprehensive medical evaluations (4 hours) with a host of specialists
It's that last appointment for which I'd love a breakdown; what exactly will this entail? Other Trisomy parents highly recommend a sleep study to check for apnea and a swallow study before bottle or breastfeeding. I'd like to know if those are scheduled for that day and if not, see if we can get something scheduled before we move in July. Verity will be nearly 3 months old by the time we have this comprehensive appointment; I have no idea if she will be able and willing to nurse prior to that time or not, but I intend to keep trying!
Meanwhile...we are just plugging away at home, trying to figure out how to not only keep Verity fed and happy but also the army of other people God has put in our lives! We are grateful to have both grandmas with us for a short overlapping time. Ted's mom will head back home in about a week and a half. Hard to believe she will have been with us about 2 months!! It has been such a blessing to have her here, and we will miss her AND the wonderful help she has provided. My mom is able to stay somewhat indefinitely, and I'm thankful that we will have her and her years of nursing experience to help guide us as we navigate our new normal.
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