We met with our ped on Tuesday. I'm so glad that she is back in the country! She is always happy to see us and so helpful too. She also spends a lot of time with us which I greatly appreciate! I know I've said this before, but Eliana has definitely had more doctor's visits than ALL of my other children combined. I'm sure she reached this in the first couple of months of her life too.
A funny - the nurse that typically checks us in always mispronounces Eliana's name. When I corrected her, she laughed and said that it was good that we didn't come in more often so that she had time to get it right. Huh?! We have been in there almost every other week for months! LOL Guess it is easy for some to forget. Though when I walk in the door, I'm greeted by name and they get Eliana's file without me saying a word. So I guess we are known by others there.
Dr. L and I talked about a number of things and she gave me some recommendations.
FEEDING - She is fine with decreasing both the number of feeds (from 6 to 5) and the amount (from 150cc to 140cc). I'm also fine to spread out the feedings to 3.5 to 4 hours instead of every 3 hours. Since Eliana has been at the 90% for weight, she feels it is fine for her to move down the curve a little more. In the last week with decreased feeds she has not gained any weight. I think she needs the decreased volumes for a number of reasons - mainly because it will be hard for her to ever be hungry if she is always overfilled. She also suggested that I flush her tube with more water to increase her fluid levels over the course of the day.
BLOODWORK - Eliana is scheduled to have this done at the Down syndrome clinic tomorrow. Dr L said this was fine for the first time and then we could have it done at the ped office in the future. She looked at Eliana's arms and thought she was still going to be a hard stick. Poor little one. She gave me a prescription for a cream to numb the area prior to getting the blood drawn! It takes about an hour to take effect so I really want to time it right - so it is working and hasn't worn off.
G-TUBE - The button popped open twice while we were there. Eliana didn't have her clothes on and was rolling around on the examing table. Dr L didn't like this at all. She immediately got on the phone with the surgeon's nurse (friend of hers and the gal that helped me last week) to see what could be done. Basically, we just have to make do for at least another month. We can then schedule to see them and have a different button put in. (A mic-key.) I told her that I was concerned that I would only be trading one set of problems for another as this is what it has seemed like with the change from the NG to the G. She shared the the nurse had said the same thing. *sigh* At least most of the problems with the G seem to be for me to deal with and not Eliana.
THERAPY - She is encouraging me to get an evaluation on speech as well as start OT.
Our feeding therapy went well too. For the first time she had a good feeding while we were there. (She took about 1.5 ounces.) The therapist held her hands in front of her chest and this seemed to help. It's something that she used to do on her own - that I loved - but hasn't done so much any more.
The following feedings yesterday were also good - for where we are now. She took 1.5 and 2 ounces! I am thrilled and am hoping that maybe - just maybe - this is the start to something good!
She has done well today for the feedings in which she has been awake which was just two of them. She took over 3 ounces total. Again, I'm very encouraged.
Prayer requests:
*Tomorrow we go to the Down syndrome clinic to meet with a doctor, genetic counselor and to get bloodwork done. Please pray for this to be a good - and not too lengthy time.
*Bloodwork - Please pray that they are able to find a vein easily and on the first stick. Please pray that the numbing cream would be timed just right!!!
*Feeding - Pray that she would continue to improve and be able and willing to eat at each feeding! I so want her to learn this!
Here is our most recent family photo. I know - I should have taken off my glasses. I tried in a couple of photos, but can't open my eyes in the sun.
Will update on the clinic visit as I'm able to. Thank you for your prayers and support!
With love,
Leslie
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