Andy took Maggie to her pediatrician yesterday for her 1 year "well" visit. Dr. Taylor, her pediatrician, had called a month or so ago telling us that when Maggie was doing better, she wanted to see her. This visit found Maggie's growth percentiles follows--90% head circumference, 75% height, 30% weight. Though the 30% isn't a major problem, it is more noteworthy because she used to be in the 90th percentile in weight as well. It has now been over 5 months since her diagnosis and she has gone from about 19 pounds to 21. Not enough growth, although Dr. French (her oncologist) predicted that this would probably happen. However, Dr. Taylor gave us a referral to the nutritionist and a feeding evaluation. Dr. Taylor doesn't think that Maggie is getting enough calories, especially since she is not eating any solid foods. So, another round of doctor visits for us. We are unable to schedule visits until January, however, so maybe between now and then Maggie will prove to us that she can eat more.
Today I decided to start as if Maggie was just beginning solids by mixing breastmilk with baby cereal. She took several spoonfuls, which is a start. We'll try to progress into other foods like we did when she was younger. Though I know that I should not get down about all of this, I was a little upset yesterday. Sometimes I feel as if our parenting gets judged upon, perhaps Maggie's lack of solid food interest and loss of weight is a reflection on our parenting. Since she is primarily breastfed, I feel a large responsibility for her lack of weight gain and it saddens me. Maybe this doesn't make sense and maybe I can't explain it completely, but when I found out about the referral, I just felt that this was one more example of how our life isn't normal and Maggie is very different from other children her age.
Tomorrow morning at 8:00 Maggie begins her next phase of chemotherapy. She will get a spinal tap with chemo and a push of the chemo drug Vincristine. Maggie will also get her monthly pneumonia medicine which takes about an hour to infuse. We will most likely be in the Almost Home unit of the hospital all morning tomorrow. I have taken a personal day so that I can be with Maggie, especially since she will not be able to eat after 5:00 am tomorrow. It might be a tough morning for us since Maggie wakes up about every hour and thiry minutes to two hours to feed.
Pray that Maggie's spinal fluid will be clear of leukemia cells, that she will continue to respond well to the chemo, that she will not get any side effects, and that she will not be to fussy as she will begin 5 days of steroids. Thank you all for your continued thoughts and prayers. They are very much appreciated!
4 comments:
Whitney, please don't feel that the doctor's referral reflects on your parenting. Children in third world countries eat only breast milk for years! You and Andy are not parenting under any sort of normal circumstances. You're both amazing. The nursing has been a huge comfort to your baby through this. Perhaps see the referral as an attempt to help you all keep up your strength. Also, with the addition of solids, Maggie won't need to nurse as often. Be kind to yourselves, you have both risen to an unimaginable challenge and are doing everything that you can to see your darling girl through this as a healthy and happy child.
I was just about to say all the things Christina said. People on chemo lose weight because the treatment robs them of their appetite. When my friend was on chemo it was hard to find anything she felt like eating that she could also keep down. Maggie is so blessed that you're eager to continue nursing her and that's a level of commitment makes you BOTH good parents.
Debbie M.
May I say "Ditto" two times for what both Christina and Debbie said. And they said it so well! You are very blessed to have such encouraging and wise support!!! Praying for all of you!
In His Hands,
Amy!
I agree with the previous writers in praising you, Whitney and Andy, for your continuing dedication to Maggie's healing.
And I commend you for remaining in touch with and being able to express the self-questionings that are inevitable in your situation.
I have found that putting ones feelings "out there" makes it much easier to put them in perspective and deal with them.
It also helps others be more supportive, including those of us following your journey at a distance.
For example, we know when it is especially important to remind you of how heroically caring you continue to be in helping Maggie heal.
And your honesty allows us to be more specific in our continuing prayers.
With great love, appreciation, and admiration, Great Aunt Phyllis
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