With milestones come certain feelings for us to sort out. Kendall turns two in just a few weeks and her approach to this date come with successes, yet clouded with turmoil and questions yet to be answered.
On the positive side, she continues to make developmental gains. Not too long ago, we were concerned about her not being able to get herself into a sitting position. We were also worried that her ability to make new sounds was coming to an end. In both areas, she has made nice progress. It’s second nature for her to move easily between lying, sitting and into the hands/knees position. It’s amazing what we take for granted and how we learn to move in certain ways. Watching her therapists work with her gives us a new understanding of the basic movement fundamentals and how muscle groups function together.
With the tubes in her ears, she continues to make more sounds. We like to believe that they are helping her hear more clearly and that she can hear her own voice better. Regardless, she is starting to mimic some of our sounds and voice movements. There are probably a dozen or so sounds that she will copy from us on a regular basis. We have some hopes of her talking, but don’t expect that her vocabulary will get beyond just a few words. We can only hope for the best.
On the downside, it appears that Kendall is losing weight. She is making the transition from baby to little girl, but is thinning out and has been for the last month or so. We weren’t sure if it was the case until we got her weighed at the doctor when she got her tubes. She was down to 18 lbs from 22 lbs at her peak. She has also been sick these past few days and hasn’t been able to keep down food. It wouldn’t surprise us if she has lost a few more pounds. Her therapists even noticed that she looks skinny. We’re at a loss with what to do to get her to gain some weight. She can only handle so much food and with the night feedings coming to an end, we only have so many options to keep her nutrition up. It’s been such a hard thing to manage for us and we feel so bad for her.
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hi im really happy to hear on all the progress kendall is making at her own pace its amazing on the otherside im sorry to hear obout her weight loss. IM a 25 year mom of 3 . MY youngest son 19 months old named liam has whs . I have a 3 yr old son Isaac with autism and a 7 yr beautiful little girl no health problems with her . my sons high risk clinic has put him on boost essentials 1.5 vanilla flavor and im goin through the same thing as you i know how you feel and i understand your frustation . they just placed a gtube on him and even like that he still vomits alot cannot tolerate alot of volume in one feeding. but i have found what works for him i do 70 ml feedings during the day from 6-6 pm then at 9pm i start the night feedings wich i do 50 ml 3 times at night the last one at 4 am .in between the day feeding i give him 20ml of watwr and 15ml of boost . so he hasnt lost no calories needed. he has only vomited about 2 times in 5 days and its been very little amounts on the past it was about 4-6 times a day so its working for him . we are also doing baby food feeding of 4 ounzes a feeding and we will give it instead of a boost feeding so we just swich. so he doesnt loose his oral movements.you know your baby the best dr.s may have the knowlege of the illness but you know your baby more than anyone does so you have to try to find the solution and you will just keep trying and dont give up . i have found that giving my baby smaller feedings and slower letting him take his time works on his stomach the best good luck and my prayers are with you and your family god bless kendall. love brenda and liam 19 months old