March Madness

   One thing I don't think I have talked about before is all the counting, checking off and organizing of the supplies that Michael does each month when Emma's medical supplies get shipped. We get several boxes each month and Michael makes sure we have everything. He also calls at the end of each month to re-order the supplies because we learned the hard way last summer that the supplies do not automatically get shipped, since we assumed they knew she'd still need it all, and we have to call and let them know at the end of each month that Emma still requires all of the same medical materials.

   Some of my jobs related to Emma include picking up her 14 cans of EleCare Jr formula from WIC at the beginning of each month, scheduling doctor appointments and keeping track of our calendar, and ordering then picking up her medicines and treatments from the pharmacy before they are needed. Also blogging!! :)
   Today I was on the phone for at least an hour because one of her doctors apparently forgot to submit an order for some new supplies, including two new custom trachs because apparently each trach is only supposed to be used and washed five times and we've been reusing the same two since she came home from the hospital 9 months ago. We change her trach once a week (usually on Monday nights), which means her two trachs have been used at least 22 times each! I was on hold for 20 minutes with the doctor's office before anyone even picked up, which has never happened before, then they said they forgot to submit the order on Tuesday, but that they just faxed it. So I need to call the medical supply company now and make sure they got it. (Done.) I had the same issue last week with having to call another doctor three different times about getting paperwork for a swallow study sent over to the main hospital so we can get that set up. The speech therapist can't try to give Emma anything by mouth until she knows that Emma will be able to swallow formula or baby food without choking. So now I also need to call the hospital to make sure they got that order. (Still being worked on because the doctor didn't send all the forms that were needed = 3 extra phone calls that I have to make back and forth because I guess they aren't able to call each other..?)

   After we went to Emma's Pulmonology appointment for her last RSV shot they gave me a paper that had her next appointment date and time. The paper also listed her Current Health Issues, so I wanted to list those as a refresher:
  >> Feeding problems (unable to swallow)
  >> Child with short stature
  >> Meier-Gorlin Syndrome
  >> Genu recurvatum, congenital (backwards bending knees)
  >> G-tube feedings
  >> Attention to Gastrostomy
  >> Chronic lung disease
  >> Restrictive lung disease
  >> Airway malacia
  >> Tracheostomy dependent
  >> Ventilator dependent
  >> Need for RSV immunization
  >> Premature adrenarche

That last one listed is a new one. When we went to the pediatrician in January he seemed pretty concerned that Emma has a little bit of pubic hair, so he referred us to endocrinology. (I have not asked any of our Meier-Gorlin friends if they had similar circumstances at a young age.) He said she might have to be put on special medicine or get shots to stop the very pre-mature development of puberty. Michael and I had noticed the little hairs before while changing her diaper often, but didn't think it was a problem. We had to wait a month for the earliest appointment, which we went to at the end of February. Luckily, that doctor was not nearly as concerned as the pediatrician and says it isn't anything to be worried about since it looked more like arm hair and she hasn't started developing baby breasts and does not smell bad or have armpit hair. He got an X-ray of her hand just to check her bone age. He said if her bone age was a few years older than she is, that could explain why her brain is telling her body to start growing the hair. But her bone age is only one!

  A second new thing the pediatrician recommended is for Emma to see a dentist. Since she can't close her mouth all the way (prompting the pediatrician to also ask if we had talked to anyone about her getting jaw surgery- no, we have not) he wanted her to get a fluoride treatment. The dental assistant said X-rays and a cleaning are also typically done, but we aren't sure how much Emma will tolerate. I don't have dental insurance, and wouldn't be able to add it on until August anyway, so we'll just pay the fee for now. Luckily she said we only have to pay for what gets done. If Emma won't let the dentist do the cleaning, we don't pay that part of the fee. Her appointment is scheduled for the beginning of April.
  The pediatrician also highly recommends that Michael and I go out on a date, just ourselves, and have someone babysit Emma. We would only feel comfortable with one of our nurse or RT friends from the NICU watching Emma. However, many things have been recommended to us, and Michael and I decide as a team what we are most happy with doing for/with Emma. One of those decisions is that we like Emma coming on the dates with us. Family dates! So here are pictures of our two recent ones:

   (Pheeew ~ just got her swallow study scheduled for next month!!)  The first few pictures are from when we went to Bahama Breeze a few weeks ago. She was awake then, so after Michael had eaten most of his food he took Emma out of the stroller so she could sit at the table with us. On Tuesday we went to Yard House. She slept the whole time that night, so it was kind of like we were "alone", but I always forget that they have TVs in there so Michael and I didn't talk that much, haha. We did talk about which little towns and parks we want to go to again when we go on our vacation. It's the same area we went to on our Babymoon in April 2017 while I was pregnant with Emma. By the way, these dates were free for us because we were using gift cards that we have accrued over the years. Thank you to our family for sending them. I love gift cards! :)
   Please enjoy these few silly pictures of Emma - she gets so wiggly on the mat that she ends of sliding off either end of it. We have to adjust her every 30 minutes or so.

   Looking like she is getting abducted by aliens in her sleep- haha! (But notice how she always has her mouth open.) And I was so proud of her one night when she found and played with/spun a toy that was behind her! It's so fun to see her learning all these new things. A friend had a shirt on the other day that said, "Grow at your own pace". I wish they made that in baby sizes. I would definitely get one for Emma!

   Yes, that is all her natural baby hair. :)  In the pictures below I got Facebook memory notifications, two for March 6th. The first one from 2017 when I was 23 weeks pregnant, and the second one for last year, about seven weeks before Emma finally came home from the NICU. So, of course, I asked Michael to take another picture on March 6th, 2019!

   In the Best Gift Ever onezie you will notice a big milk stain on her stomach. I took that picture on purpose to show the Gastroenterologist. Michael says we need to get an updated Mic-Key button with a smaller stem (the piece that attaches the outside to the balloon inside her stomach). Since she has been kicking her legs and squeezing her stomach and pulling her legs up to her shoulders, she has been creating abs apparently so her stomach wall is thinner now than it was in November. When she lays on her stomach at night, some of the milk leaks out through the space caused by the Mic-Key button being pushed to the side. The surgical assistant said GI has Mic-Key buttons in their office (the surgical office does not), so we will see GI next week.
   In the other pictures we were practicing tummy time, which she doesn't like. She doesn't mind rolling to her stomach on her own, but she doesn't like being propped up that way. I think it hurts her arms trying to support herself because she always cries in that position. She does need the practice though to build those arm muscles. But I love her little leg bent at the knee (or where the knee would be- she doesn't have knee caps!) like she's trying to move herself.  We know she has some arm strength because lately she has been pulling at the formula tubing so hard that it pops the little door open (where it says Infinity), which causes the feeding pump to stop the flow and alarm.
   Lastly, some new things Michael has been working on lately since he was able to get a 3D printer ~ he has been finding lots of things to make for Emma. The first thing he made was a hook for her formula bag. Before it was on the black part (a Manfroto arm), but sometimes the bag fell off because the only part it was able to hook on to was at an angle. So he made that nice blue piece and he really wants me to mention that the one shown in the picture was prototype #2. He has since made another one that has a thicker part at the bottom where it sticks in to the black Manfroto arm.

   A few days ago he began working on a holder for her pink sodium chloride bullets that get shuffled around this little cardboard box with her "tooth" (white piece used to disconnect her vent circuit if it's stuck too tight against her trach) and the syringe. In the purple box he is making, he has little slits so each pink bullet will stay upright even if you move the ones around it. He keeps tweaking it so I don't have a picture of the finished product yet. But, I tell ya, this man I married is a genius!