We took Harper to her first visit with Dr. Irwin yesterday morning. I had high hopes for her weight but it remained at 6lbs 6ozs. She had left the hospital at 6lbs 7ozs and I can't help but wonder if the difference is just in the calibration of the hospital vs doctor's office scales. We will go back on Friday for a weight recheck and hopefully, she will have gained some by then. I have been dilligent to keep accurate records of how much she drinks and at what times and on paper it seems she must be gaining but maybe she is metabolizing it differently. Dr. Irwin also wanted her to be seen by a Speech Therapist at Children's Hospital to evaluate her suck/swallow technique. It will be a good indication of where she is and what, if anything, needs to be adjusted, to ensure she is performing well. That appointment is this Thursday morning at 10:00 am. She also noticed a small 'dimple' on her bottom and has ordered an ultra sound of her spine to determine everything is as it should be there as well. That appointment is a week from today. Other than those issues, she switched her back to a regular milk based formula. The hospital had put her on prosobee, soy based formula, but Dr. Irwin mentioned that having several adverse effects on infants long term. The soy based formulas are packed with estrogen and can cause constipation, which we had already begun to notice. I was all in favor of placing her back on Similac as I too had found what she was saying to be true after my own research on soy based formulas. If she hasn't gained by this Friday, the next optino will be to switch her to a high calorie formula.
We received a call from Easter Seals this morning and will be setting up an appointment for them to come and begin providing, what they termed, 'high risk monitoring.' I just know they are going to be amazed by how much she can already do just as we are! We are constantly receiving feedback about how fortunate we are that Harper not only came home from the hospital so quickly but how amazing and rare it is that she didn't come home attached to any 'strings', as Hadley put it. We are learning Harper is not the norm because of her amazing health and strength but we knew that as she is an extraordinarily special little girl!
With all of the medical appointments and help coming from Easter Seals, I am beginning to feel a bit overwhelmed by it all. I feel as though I need to start taking notes during each visit and probably should. There is already so much to do and learn when all I really want to do right now is enjoy having her home. I am still so focused on each feeding and getting her to a point where she is waking herself to eat. I know it sounds pleasant to have a baby who doesn't cry but it is actually quite the opposite. I want nothing more than to hear her precious little cry as an alarm sounding to tell me she is hungry.
Jacob had a very special opportunity yesterday. We were put in contact with a family who has a six year old little girl who also has trisomy 21. This family is a friend of our neighbors and wants to be a support system and source of encouragement for us and Harper. Jacob met her father yesterday for lunch and as an added bonus, he was able to stop by their home and meet their daughter. What this did for Jacob was truly amazing. He came home beaming and so excited to have met her and described her as nothing less than a precious little girl. She was currently working on school work and even showed Jacob her math homework. Nothing different than what will be happeneing here in our own home with Hadley beginning Kindergarten this year. We are going to be learning so much through organizations like the Easter Seals, the pediatrician and other medical therapists and our own research, but what this family can do for us will be priceless. I will be able to meet the mother this Thursday, when she will so graciously be bringing us a meal.
We have had such an amazing outpouring of love and support from our church family and community. The meals we have been receiving have been so appreciated, and delicious, as I haven't begun to get back into a regular routine of home life, which includes grocery shopping. Thank you to all who have offered to help with Hayden and Hadley as well.
Please keep praying for Harper to show progress in her feeding and weight and I will be posting her evaluations with the therapists in the days to come.
We received a call from Easter Seals this morning and will be setting up an appointment for them to come and begin providing, what they termed, 'high risk monitoring.' I just know they are going to be amazed by how much she can already do just as we are! We are constantly receiving feedback about how fortunate we are that Harper not only came home from the hospital so quickly but how amazing and rare it is that she didn't come home attached to any 'strings', as Hadley put it. We are learning Harper is not the norm because of her amazing health and strength but we knew that as she is an extraordinarily special little girl!
With all of the medical appointments and help coming from Easter Seals, I am beginning to feel a bit overwhelmed by it all. I feel as though I need to start taking notes during each visit and probably should. There is already so much to do and learn when all I really want to do right now is enjoy having her home. I am still so focused on each feeding and getting her to a point where she is waking herself to eat. I know it sounds pleasant to have a baby who doesn't cry but it is actually quite the opposite. I want nothing more than to hear her precious little cry as an alarm sounding to tell me she is hungry.
Jacob had a very special opportunity yesterday. We were put in contact with a family who has a six year old little girl who also has trisomy 21. This family is a friend of our neighbors and wants to be a support system and source of encouragement for us and Harper. Jacob met her father yesterday for lunch and as an added bonus, he was able to stop by their home and meet their daughter. What this did for Jacob was truly amazing. He came home beaming and so excited to have met her and described her as nothing less than a precious little girl. She was currently working on school work and even showed Jacob her math homework. Nothing different than what will be happeneing here in our own home with Hadley beginning Kindergarten this year. We are going to be learning so much through organizations like the Easter Seals, the pediatrician and other medical therapists and our own research, but what this family can do for us will be priceless. I will be able to meet the mother this Thursday, when she will so graciously be bringing us a meal.
We have had such an amazing outpouring of love and support from our church family and community. The meals we have been receiving have been so appreciated, and delicious, as I haven't begun to get back into a regular routine of home life, which includes grocery shopping. Thank you to all who have offered to help with Hayden and Hadley as well.
Please keep praying for Harper to show progress in her feeding and weight and I will be posting her evaluations with the therapists in the days to come.
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