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Harper's arrival and journey into life

Latest journal entry

Mar 20, 2019 - Pull up a chair, even if it's lightly used

Oops, I thought it was about a month from my last post and somehow a second month snuck in. It has been a busy month with some ups and downs, but you probably knew that before you ever opened this page. We have been over a month with no hospital visit! Our last visit was Feb 14th, good old valentine’s day. We noticed she was hurting for about a day and just acting strange overall. We had some suspicion it was something related to her insides and sure enough, she started throwing up formula. Strangely enough we were at the GI doctor for a checkup anyway and he sent us up to Erlanger. Of course this means a hospital trip and putting her to sleep to get a new one installed, what else did you expect? Sigh. Everything went fairly smoothly, at least as well as you can expect. We did count 5 places where they tried to stick an IV in before the procedure. Poor girl had bruised places all over from those. The tube was changed out and again they explained her odd shaped intestines being the cause of placement problems. Overall there were no surprises and we went home with a more comfortable little girl.

Since then she’s been a good little girl and really happy overall. She’s been playful and jabberish and loving the world around her. We had another major win in terms of equipment needs in the past month. Some old friends of ours and former neighbors of Jami’s reached out to her wanting to help Harp. They made a really large donation for anything that she needed, cause, seems like there’s always something we need. We thought we could put it towards a positioning chair we have been wanting for a long time. It’s the same type we used at the Marcus institute when we were doing the feeding therapy. Problem is those run about $5,000ish. I guess if we are going to save up for one then now was as good a time as any. Turns out we didn’t have to wait very long. A newer friend Jami has been following has a little boy who’s about 6 years old now and had outgrown some of his equipment, including one of these high low positioning chair. They were looking to buy a handicap van for him and said they would give us the chair if we could give a little towards their goal. So all in all we were able to get the chair for only $600! She loves it and it will grow with her for several years to come. She now sits right up at the table with us for meals! It can lower so the nurses can work with her while sitting down on the ground, or raise to let her see the TV, or lower again so the kids can talk to her and play, it rolls all over the house with ease, and it came with a second stroller base that also allows you to strap it down in a car to be used as a car seat! I know most people don’t get excited about chairs and strollers and what not, but it expands life so much for harper. She’s been out in the sun riding in her new stroller we got a few weeks ago up and down the street a lot lately and loves it. She loves being outside and in the sunshine. We continue to be humbled by how people make such large sacrifices to open up the world to Harper. I would hope I am as generous to others in need. I need to do a better job of seeing others in those times of need because I tend to get too caught up in my own world and get tunnel vision. I know there are lots of people out there going through much more difficult things than we are.

There are two other big items in the works currently. We had a visit with the school system last week and it looks like Harper will be starting school soon! It will be one day a week for about 2-3 hours. It will start on her 3rd birthday and go through the end of the school year. In the fall we may go up to two times a week depending on how she does. She will get lots of interaction there as well as therapies! One of our favorite therapists that had left the place we currently go in Calhoun is now with the school system and will be able to work with her again. I think this will be really good for Harper and for us. It will be interesting to see what she does through all of this. She did pretty good in the evaluation with them and we really liked the teacher and staff. Fingers crossed it works out.

The other big item is we now have an evaluation appointment for the new Anna Shaw clinic here in Dalton! If we could get in here for therapies it would mean we didn’t have to drive to Calhoun twice a week! This is supposed to be a top notch facility with some great workers (I think including another favorite from our current location who is moving there). There are a variety of therapy types offered, so I hope they at least have the major types we need. Surely… We go April 5th to see what we can learn.

I think that’s everything for now. Here is our current prayer list

-Praise for Jami’s health doing really well! We’ve been on those crazy drugs that have mile long warnings to them for a while now, and had been on a new one on the market for a while. At the point of giving up on it about 15 weeks in it suddenly started working! Pray it continues to work so she can be fully included daily life.

-Pray for the school and the new clinic. Staying local would be great, and getting her involved with some new places and interactions would be good for her.

-Pray for our nurse’s grandmother who was recently diagnosed with some pretty bad cancer. It’s never easy to get that news...

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