April 2008: Wynter will be 1 on the 27th! YEAH! She is 26 1/2 inches & 15lbs. 5.7oz, she is officially not on the growth chart any more. She has cut her 6th tooth, and labels baby and ball with a “B” sound and a point. As well as “P” for puppy...I think that brings the words to 11. Wynter is also signing “all done”. At her birthday party she got her feelings hurt when we took the tissue paper away that we found her snacking on...it was like a piñata exploded in her diaper later that day...well, at least we have a new creative way to make her poop.
She also got her first big “owie”. She pulled up on her ballet bar and fell and hit her mouth. Blood went everywhere. On another note, we made it through the first year of unknowns. Looking back on it, the unknown is harder than the reality of the day to day life. Things are different than what we had expected, the good and the bad. There is mourning and sadness that can feel like a death because it cut so deep, But there is also a realization of a new normal. A parallel were things are a little different, but okay. No child comes with an instruction manual...everyone is an individual. We have expected the same out of Wytner as we did Zach...have we had to make some adjustments~ sure. Things may take a little longer, or happen a little slower...but she does ALL of the same things that her brother did...I guess that is one thing that we didn't really know. No one really told us that she would still do all of the same things that every other kid does...maybe with a modification or maybe you had to break down the steps, or maybe it just took a little more time, but she did it...and she will continue to do great things if we are faithful to give her the opportunity and support.
Showing posts with label year_one. Show all posts
Showing posts with label year_one. Show all posts
Monday, June 29, 2009
March 2008
March 2008: 26 inches, 15.8 lbs. Wynter added the words ”yum” and “banana”...now her words total 8. Besides nursing she eats: peas, green beans, sweet potatoes, carrots, bananas, apples, dried mango... and may have a slight reaction to squash? (rash all over body). She has started to clap and wave. She “rakes” her fingers to pick up small things. She is eating better: about 3 oz in 15 minutes. Wytner also cut her 5th tooth this month! She now has 3 on top and two on bottom... note* anything that goes in her mouth WILL BE BITTEN.
February 2008
February 2008: Wynter will be 10 months old at the end of the month: there really seems to be an issue with growth now. She had been slowing down, but now it almost seems to have flat lined. Her thyroid seems to be in range and then a little our of range. Her IGF1 is so low it is not readable. But all they want to do is recheck it in two months..They also made her meet with a gastro intestinal physician to check for malnutrition~ which she does not have an issue with. I am really struggling with this. I can feel like there is something wrong and the doctors don't seem to care enough to be aggressive enough to figure out where the problem is coming from. I am overwhelmed with all of my responsibilities. I feel like I am fighting this battle for her all alone. No one seems to know a lot about IGF1. On a good note: Wytner has added “dada” and “nana” and “lala” to her words: now totaling 6. Wytner also got two more teeth, now she has 4 teeth total!.
January 2008
January 2008: Wynter is 25 1/2 inches and 15 lbs. (her growth seems to have slowed way down for some reason...I will keep an eye on it for now). Zach broke his foot running through the yard on New Years...This is his second cast. We are starting to have to give Wytner enemas...she is still not pooping the way she should be. Something is going on...I will continue to monitor what is going on with that too.
December 2007
December 2007: Wynter got fitted for orthotics on her feet...As she weight bears more, we want her to build the correct muscles and grow her bones in good alignment now, instead of having to spend even more time later correcting the problem. Wynter can sit up for long periods of time now....minutes. She is eating a little better, babbling more, less tongue thrusting....still working on getting her in the crawling position. She is only pooping 3 times a week....but all she eats is vegetables and she nurses I can also say “baba” and “pa” now...that is a total of 3 “words”. This was her first Christmas. She enjoyed all the lights, same a Zach. We are realizing how similar they really are. We love her so much and Zach is so sensitive to her! We are so blessed by our kids
November 2007
November 2007: She is sitting up for about 45 seconds on her own. She cut her bottom right tooth. Yeah, first tooth! She is saying “mama”. I am so excited because Zachary said “dada” first. Adam’s feeling may be hurt though. We learned how to take a pacifier...(only lasted a short while). Getting Wynter to eat is hard, we have to get creative. She cut a second tooth: bottom left. Enjoys giggling and laughing at brother. Also starting to not poop everyday...we will keep an eye on that!
October 2007
October 2007: They performed an ABR (elaborate hearing test)....congratulations Wytner, the results say that you have better hearing than your parents!! Praise God for the good report! Zach brought home lice from school...gross~ this is the one bad thing about him not having the typical “boys” hair cut...it is long a too pretty to shave off. But this is defiantly a downer! Wytner is grabbing both her feet with both her hands, it is her FAVORITE thing to do, and she does it all the time. She continues with Neurodevelopmental (NDT) therapy & cranial sacral therapy on a regular basis. We are pleased with what is seems to be doing for her. ECI comes out and they are always impressed with how she is doing and the creative ways we have improvised therapies at home. Wynter has started teething. Thank God for homeopathic teething tabs by hylands! She enjoys sitting up with help, and in her bumbo. That is a great invention! Her hair is also getting long enough to put bows in. We are starting to play with the idea of eating vegetables. She is 25” long & weighs 14 lbs. and 15 oz.
September 2007
September 2007: Starting to roll over from back to tummy. Zachary is starting mother's day out. He will go two days a week. I feel so guilty, and I miss him so much, but this gives me time with Wynter to take her to therapy and other appointments with out just dragging him around. We had some really good baby giggles this month~ it just melted our hearts. Each day is different than other, we feel still like we know nothing about DS, even despite the countless hours we spend researching on Google. I think it is more a fear of the unknown...we feel out of control, helpless. I feel alone a lot. How can I expect anyone else to understand what I am going through and what life means with Wynter when I can't even seem to make sense of it myself.
August 2007
August 2007: Wytner has started Neurodevelopmental therapy. She is rolling over all the time now. She likes to play with her feet. Coos at herself in the mirror and with toys. We drove to see family for the first time. Meet and talked with Mr. and Mrs. Camp...their youngest, is 19 now, has DS and has just started bible college. Wynter had a weird unexplained “screaming session” for three Thursdays in a row....???? She weighs 13.8 lbs and is 23 1/2 inches long.
July 2007
July 2007: Wynter has started batting at toys and laughs. She rolled over from stomach to back a few times, to the left and the right. She can do it faster if I hold her feet down sturdy...it gives her a little something to push on. She holds her hair when she nurses :) and she is bringing toys to her mouth. She also keep chin to chest when you pull her up by her arms. She found her thumb...I am not sure how I feel about that. Her cranial sacral therapist said that it is a natural way to pull their “high pallet” in their mouth, down. She is 22 1/2 inches long and 11 lbs. 5 oz...still in the 50%. !
June 19th
June 19th : We started Cranial Sacral therapy with Judy in Austin. She is smiling , making some baby noises, and starting to hold her head up a little . Zachary, her 2 year old brother, saw me changing her diaper and asked “mommy, were did her ding-ding go.” He was very concerned :) SO CUTE
June 6th
June 6th: Early Childhood Intervention (ECI) came out & started a service plan (physical therapy) for Wynter. They will be out from time to time to see how she is doing and give us advise on how to help her to develop-mentally progress.
May 29th
May 29th: Wynter weighs 8lbs. 9oz and her length is now 21”. She is in the 50% on “normal” growth charts. We took her to see a Cardiologist. She is very blessed with a pretty healthy heart, although she does have a small PDA & a tiny PFO that should have closed by her due date ~ but didn't...He says it will most likely close on its own in time. She also was diagnosed with a murmur, caused by Pulmonary Stenosis. He is hopeful that this will not cause any big problems in her future, but will keep an eye on it and see her every 6 months or so.
April 27th 2007: My labor
April 27th 2007: My labor was a total of 3 hours from start to finish. Wynter was born at home at 8:10pm. She was 7lbs / 9oz and 18 1/2 inches long. I remember seeing her arms just fall open as if she could not hold them together. I looked at her, and wondered. I remember brushing off my initial thoughts of something being wrong. I had such a hard pregnancy, that I just wanted to be alone for a moment. But the midwife stayed very persistent that the baby needed to nurse. When everyone left our home that night, the midwife told me to wake her up every few hours and make her nurse and told me she would be back tomorrow. I didn't read into what she was saying during that moment in time. We were not able to wake Wynter up all night...we started to get worried because she slept for 14 hours before we were able to wake her up to eat again. The midwife arrived early afternoon and stated her concern: she thought that Wynter had several signs of having Trisonomy 21. Every thought that had crossed my mind in the past 18 hours hit me like a wall. I knew it was true. I think I had known all along, even during my pregnancy. Those are just not thoughts that you indulge as being true...you just explain it away as being worried, but people reassure you that everything would be fine. Things were not fine. They were shattered. Devastated is not even a strong enough word. Such a fear of the unknown. What does it mean for her, for us...? So many unanswered questions. It was Saturday. We would have to wait until Monday to call and schedule her 3 day check up. You cry. You second guess. You barter with God and pray for anything else but “this”. We even looked at family pictures and there were some strong similarities, so we even tried to just say it was just a “family look”. They took some blood and sent it off to be checked. One whole week later, they confirmed that Wynter had Robertsonian Translocation Trisonomy 21. A rare form of Down Syndrome. Wynter was also VERY jaundice her first week of life, we had to drive her up to the lab every day for them to check her billiruben count, which at one point was up to 17...dangerously high~ she had to live her first week of life wrapped up in a “billi~blanket”.
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