Wow, it's been forever since I have updated on here. Things have been very busy. In December Elizabeth and I moved to Grand Rapids and inot my sister's for a coupe of months. She started school at Godfrey-Lee and I started work!! Then in Feb we moved into Bill's house.
Elizabeth is doing well in schol and in March I will be enrolling her in Kindergarten. I am actually very scared for this as she will still need one on one help with eating her meals and still need the structured setting we have in place and times as well. Her dr has tried to reassure me that with all this being in her IEP the school MUST follow the guidelines and if neccesary, hire someone to be trained to feed her the meals and snacks and also give her that time in school for it. She will be attending Congress Elementary in Grand Rapids Public Schools and I have heard that the special education department in G.R.P is one of the best in the state, so that gives me some hope that things will transition smoothly.
Currently Elizabeth is taking 5 oz of pureed food and 5 oz of pudding milk every meal and we just recently took her down to only a 1/2 a can of formula a night through the feeding tube. She will go in for another weight check in 4 weeks to see if we can dc the last 1/2 a can of formula and just continue with the food by mouth. This has been a very long path and will conitnue to be a long journey as we don't forsee her eating age appropriate food anytime in the near or distant future. We also recently added Neurontin on board to help with the gagging she is still having. Our goal is to be able to get her off the Prevacid and then slowly get her off the Neurontin as well. I have been told that even if we stop using her feeding tube in the next two months, it will still stay in place for at least another 6 months to a year to see how Elizabeth does on total oral feeds. I am happy with this, as I was scared they would take it out too soon. She will definately have to have surgery to close the hole once the tube is removed as she has so much scar tissue there. All in all we are moving forward and achieving small victories along the way.
I am working for Hope Network as a chauffuer and I l.ove my job. I work full-time, Monday through Friday and I find it to be a very rewarding and satisfying job. Elizabeth and I are doing very well at Bill's and she has slowly adjusted to all the moves. Bill is a wonderful man and has been a true gift from God for both of us. He is great with Elizabeth and is so loving and giving and caring. I honestly couldn't ask for a better man to be in our lives and to love us the way he does!
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