Emma's Summer

   Before going into what it going on this week, here are some of my favorite Emma pictures from the past two months since I have not been able to post recently since we don't have Internet at home. We cancelled it in January while we were at the University of Michigan and not using it. One thing I love is having people come visit Emma and see how well Michael and I take care of her. The most impressed seems to be Michael's mom. She gushes about how great we are doing as parents, especially with a daughter that requires a lot of medical attention. I really enjoy hearing these things.

 Being silly with Grandpa Al (Michael's dad).

 Comparison of growth between this 4th of July and last year when she was only a few weeks old!

 
   New things: she got her glasses on her birthday (June 12th) and removable leg splints later in the month by the Occupational Therapist. Now we go to her once each month so she can heat up the splints with a heat gun and bend them a little bit. This way Emma's legs will learn to bend and grow in the correct way rather than following the Genu Recurvatum way where the "knees" bend backwards. (I put knees in quotes because Emma does not have knee caps.) We have finally got home therapy for her. *Note: if you decide against having home nursing like we did, quadruple check if they are the ones to supply therapy nurses!* The home health company that we had for a week before Michael and I quickly agreed that we liked taking care of Emma by ourselves and knew "how she works" a lot better, we cancelled the home nursing service. The company never said anything about being related to therapy. They never mentioned it when we met them, signed up, never said anything while they were actually at our house for 12 hours a day, and therapy was not mentioned when we cancelled. It wasn't that I learned about it until a few weeks later when I called the NICU to let them know that nobody from therapy had contacted us like they were supposed to during the first week Emma was home. So we had to get a new referral from Emma's pediatrician, go through the process of getting Emma in the system (we're using Early Steps), have an at home interview with a case worker, have a "play session" with some therapists at their office so they can see where her development stands so far (she got low scores, although she was graded against regular healthy kids that had never been in the NICU), then three months after we started the process, the case worker found a therapist who could come to our house. Originally the company told us that they always want kids getting therapy at home because they learn better in a familiar environment, but when we mentioned it after Emma's development "test", they said it is really hard to get home therapy. It's only for 30 minutes each week.

   The reason we need them to come to our house is because Michael and I both have to work as much as possible in order to cover our bills. And that is just the regular home bills; it does not include medical bills. We have a weird schedule worked out and luckily our supervisors and bosses are so nice and understanding with our schedules because they know we are good employees and they love Emma too. At my job (911 and Teletype operator) I am on 12 hour shifts and mostly work 2 days then have 2 days off, etc. So Michael (special makeup FX teacher) works on the weekdays I have off. However, some of the days he could work have to be used for doctor appointments. Once in a while he will work half days if a doctor appointment is short and early in the morning. But it seems like all of the offices assume that if you have a baby with a lot of medical needs, the parents don't work, and they don't understand why we can't come in on a certain day for a doctor appointment or surgery. How else would families pay for medical insurance?

   Michael and I both have to be off from work in order to take Emma places, especially with the ventilator and how often she chokes on saliva (she can't really swallow yet, hence her still having the G-tube and needing a speech therapist to teach her to eat). The home nurses we had didn't seem to "get it" with Emma and anytime she sneezed they needed to call her doctor. That is an exaggeration, but the nurse freaked out when Emma was having trouble breathing one afternoon and quickly called the nursing manager and then Emma's NICU doctor. We knew she was okay and once we laid her down (she was just positioned in an uncomfortable way), turned up her oxygen, and changed her diaper, she was perfectly fine. The nurse seemed so surprised with how we knew what to do and that our methods were just what she needed. Michael did take Emma somewhere by himself one Saturday when I was out of town. The ride to the location went fine, but on the way back Emma's alarms were sounding, she was choking, he turned her oxygen up but it wasn't helping. She needed to be suctioned, so he had to quickly pull over and jump in the back to help her. Michael admitted that he would never try that again. So having therapy come to us is so much easier and convenient for us- and the patient!! We only have physical therapy right now. She really needs speech therapy as well. It is not a problem to have her at home with one parent at a time. In the car one of us (me) always has the focus on driving while Michael's focus is on helping Emma.

   This was a new..milestone?!.. from August 15th.  She is very flexible! She has been trying to put things in her mouth recently- toes, the blue cuff piece attached to her trach, the capped end of her suction catheter, blankets, etc- all which we believe will help her with speech therapy later on! We got her the green froggy chair (below) before her birthday. It is an infant seating chair that we thought would be good for her to work her neck muscles and try to hold her head up more in a sitting position rather than laying down or being reclined in the swing. It works pretty good for her, but she still needs more practice.

 The last three pictures are Michael helping Emma with some therapy moves that we were shown recently between the physical therapist and occupational therapist. She is good about grabbing her foot with her hand on the same side of the body, so it was suggested to teach her to cross-over. Although therapy is very important, especially since she is very smart but sometimes it seems like she is (at 14 months) as developed as a 3 month old, there is no need for her to learn to crawl or walk yet while she is still ventilator dependent. Emma's pulmonologist wants to do a sleep study in the next few months to see where he can lower her vent settings and slowly wean her off.