April 27th 2009: Congratulations Wynter! Since starting the HGH you have grown about 4 inches, gained 2 lbs., your head circumference has changed and you have built enough muscle to learn how to walk! We can actually SEE muscles in your body now. We are all so proud of everything you have accomplished!
Lets briefly recap Wytners “program”: She gets Cranial Sacral done twice a month, Pt, Ot, and St done by ND therapists each ~weekly. She eats a gluten and casein free diet. She has a blend of about 12 different supplements on every given day (twice a day) to help balance out her nutrition deficiencies. ECI comes out once a month to check on her progress and maybe offer helpful tips. She has been very healthy, only sick a few times with a cough. Wytner you are very blessed.
Zachary has had a great time at “school” and awana both this year. He loves his teachers and all of his new friends. Zach is by far, Wynters favorite person in the whole world. His tooth looks great and we went strawberry picking with the Sweds and had a blast!!! I even “chilled out” and let him play in the mud.... after we got cleaned up, we all went and saw a movie, it was really a great day together! I miss all of the time that I get to spend with Zachary. He is already growing up too fast!!
Adam and I have been married for 9 years now. It is amazing to think how things have changed... at times I feel very old. For our anniversary we went to a Susan Peoples conference about “ How kids with Down Syndrome Learn”. The Sweds watched the kids for us (this was the first time we have ever left Wynter) and we drove to the conference....unfortunatly I threw up the who way, so by the time we reached the hotel, I went to sleep. Not the best way to spend your first “alone time” in two years :( Better luck next time! That next weekend I went to a special needs potty training class.... wow, that is all I can say!
23 months old: walking with SPIO on! (see therapy, Neurodevelopmetal OR EZ at home tools. Way to go Wynter!!!!
Monday, June 29, 2009
March 2009
23 Months: Zach needs surgery to remove a tooth that broke and to put a spacer in so we don't have space issues later. Poor Boy. He looked horrible after he woke up. It took him a few days to get used to the way the spacer felt...but he never really complained about pain. Thank you lord! I am glad to say that after several unfortunate issues of doctors leaving their practices etc. We finally have a good pediatrician and endocrinologist for the kids. Yeah! This is no small feat! Oops' spoke to soon, one of them just moved their practice 2 ½ hours away.....that creates a longer drive for us every three months. O well. Maybe now I can try and figure out where all my headaches are coming from. We stayed one night in a nursing home, as one of the hurdles we needed to cross trying to get into the MDCP program. Besides the beeping and the huge springS in my back, the train whistle only went off every hour. :) I wasn't that bad. Glad that is over with! Now to hurry up and start the waiting game.
22 months old walking and pushing a basket and walking with cousin through IKEA
22 months old walking and pushing a basket and walking with cousin through IKEA
February 2009
22 Months Found out about a program called Rider 28. It helps medically needy kids bypass the 7-10 year waiting list for the MDCP program, that helps with Respit care and provides Medicaid on a year to year basis. So I am starting to learn about all of the “hoops” that I am going to have to jump through to attempt getting her approved. This basically means many more hours of paper work and phone work. Lucky me! February 27th: exactly 22 months old: WYNTER IS WALKING!!!!! No more crawling, no more scooting, she is wobbly still, but she started walking and is not looking back...she refuses to be on the ground now! SO EXCITING!!!!
January 2009
21 months old: Note* We are fostering a brand new baby girl named Selina. She came to our home a few days before Christmas, so I will be a little busy getting her all set up around here. Wynter got a pair of “Sure Steps”. Now that she is weight barring more, they will give her added support and help her build her muscles the right way and help to eliminate the amount of pronating her feet/ankles are doing now. Let me briefly tell you about a usual day, just to give you a little insight into our life:
Tuesday morning:
6:30 am:wake up to make sure Adam gets out of bed, by the time he leaves for work Zach is waking up. Get Selina a bottle, prepare Zachary and Wytners breakfast, including Wytners supplements.
Change the baby's diaper, get her dressed and packed for a visit with her mom.
Feed Wytner and then clean her and Zach up, change their clothes, do their hair and put their shoes on... be out the door by 9 am...oh yeah, I need to get ready somewhere in that time too. :)
9:30 am: drop Selina off for a visit with her mom, take Zach & Wytner to therapy. Wytner has 2 therapies back to back, she will be there till noon, but Zach only has speech, so he will come with me at 11.
11:30: pick up Selina who will see her mom again next week. Put the kids back in the car to go Get Wynter from therapy. Drive home. Wytner then falls asleep in the car, so she goes straight to her bed when we get home while I feed Zach lunch and get Selina a bottle~ but only after I bath her, because her mom has a contagious disease. Put Selina down for a nap~ put everything that went with her on the visit in the washer, Wytner wakes up to eat a late lunch....(supplements again with lunch) while Zach watched a movie for quite time.
1:30 pm:By the time I am done with Wynter's lunch, Zach is bored, Selina is a wake and we muffle through the afternoon trying to get things done, but never getting anything accomplished. Adam gets home at 5pm...we do dinner, bathes all around and bed time. Then starts the evening of picking up the house, laundry, bills, and all of “life's” little chores.... maybe a chat, then off to do more research for Wytner, finally getting to bed somewhere before 1am (maybe).
This is only one day out of our week...I am so tired just from writing it~ trust me, you don't want to know how the rest of our week goes! :)
**Also: After starting these injections, Wynter has gone from barely standing to taking steps.... we are up to 30 steps!
20 months old: crawling up stairs and slidding down slide
22 months old: Wynter is walking!
Tuesday morning:
6:30 am:wake up to make sure Adam gets out of bed, by the time he leaves for work Zach is waking up. Get Selina a bottle, prepare Zachary and Wytners breakfast, including Wytners supplements.
Change the baby's diaper, get her dressed and packed for a visit with her mom.
Feed Wytner and then clean her and Zach up, change their clothes, do their hair and put their shoes on... be out the door by 9 am...oh yeah, I need to get ready somewhere in that time too. :)
9:30 am: drop Selina off for a visit with her mom, take Zach & Wytner to therapy. Wytner has 2 therapies back to back, she will be there till noon, but Zach only has speech, so he will come with me at 11.
11:30: pick up Selina who will see her mom again next week. Put the kids back in the car to go Get Wynter from therapy. Drive home. Wytner then falls asleep in the car, so she goes straight to her bed when we get home while I feed Zach lunch and get Selina a bottle~ but only after I bath her, because her mom has a contagious disease. Put Selina down for a nap~ put everything that went with her on the visit in the washer, Wytner wakes up to eat a late lunch....(supplements again with lunch) while Zach watched a movie for quite time.
1:30 pm:By the time I am done with Wynter's lunch, Zach is bored, Selina is a wake and we muffle through the afternoon trying to get things done, but never getting anything accomplished. Adam gets home at 5pm...we do dinner, bathes all around and bed time. Then starts the evening of picking up the house, laundry, bills, and all of “life's” little chores.... maybe a chat, then off to do more research for Wytner, finally getting to bed somewhere before 1am (maybe).
This is only one day out of our week...I am so tired just from writing it~ trust me, you don't want to know how the rest of our week goes! :)
**Also: After starting these injections, Wynter has gone from barely standing to taking steps.... we are up to 30 steps!
20 months old: crawling up stairs and slidding down slide
22 months old: Wynter is walking!
December 2008
20 Months: Well, Wynter has a true Igf1 deficiency. It is hard to know what to do to help correct it. The only one Igf1 med is TOOO dangerous....so our other idea is to supplement Growth hormone to see if her liver receptors will start to read the HGH and in turn produce the Igf1. But insurance doesn't want to pay for the $20,000 a year medication. But Dr. Leitchman is convinced that it will work. With out IGF1 in a typical person: the body does not have an ability to form muscle, they don't grow, they become insulin resistant with age, and cognitive function decreases with age as well. So we have to do something.
Wynter has about 12 words. Most of which are just the beginning/ending sound of each word, with a point. >I.E. mama, dada, buba, more (and sign),baby, ball, this, banana, done(and sign), yes, I did it, hug, this, and puppy. It is also very clear to us that Wynter DOES know how to go potty upon request. It is not a coincidence because even if she does not have to go, you can see her pushing and trying! Now the hard part is learning not to go in the diaper, and communicating that we need to go to the bathroom.
UPDATE:Wynter got approved into the Pfizer bridge program. They will provide the injectable Human Growth Hormone for her while they send in appeals to the insurance company. She will be given daily injections 6 days a week for 3 months. We will then repeat her blood work to see if the levels have changed, possibly adjust the dose and try for another 3 months to determine if this will help her or not. Thank you all for your prayers as we begin this new stage in her life.
Wynter has about 12 words. Most of which are just the beginning/ending sound of each word, with a point. >I.E. mama, dada, buba, more (and sign),baby, ball, this, banana, done(and sign), yes, I did it, hug, this, and puppy. It is also very clear to us that Wynter DOES know how to go potty upon request. It is not a coincidence because even if she does not have to go, you can see her pushing and trying! Now the hard part is learning not to go in the diaper, and communicating that we need to go to the bathroom.
UPDATE:Wynter got approved into the Pfizer bridge program. They will provide the injectable Human Growth Hormone for her while they send in appeals to the insurance company. She will be given daily injections 6 days a week for 3 months. We will then repeat her blood work to see if the levels have changed, possibly adjust the dose and try for another 3 months to determine if this will help her or not. Thank you all for your prayers as we begin this new stage in her life.
November 2008
19 months: We were very happy to met with DR. Lawrence Leitchman. He had studied Down Syndrome for over 25 years, is the creator of the Nurtrivene supplements that Wynter is on and basically just has a lot of overall knowledge of the health issues with our kids that have DS. I am working on trying to get a website up and running to make more available to other families all of the valuable different information that I have learned that had dramatically effected Wynter. ECI ( early childhood intervention) did her assessment recently and each evaluated area was aged differently, but her scores all fell between 16 months and 20 months. Her gross motor skill was the lowest due to her very low muscle tone; they averaged her at 18 months. She scored the highest in social areas :) no surprise there! Her PT also suggested a “Spio”, so she will be wearing that most days to help her with body awareness and trunk support. (See Spoi under the therapy button on the website).
We also had to make an appointment with a neurologist for Wynter. The back of her head seems to be indenting vertically alone the back of her head. But after a Ct/MRI, there is nothing “wrong” and no explanation. So we are hoping that more cranial sacral work and GROWING will help. He said to come back if anything changes.
17 months old: correct crawling, FINALLY
We also had to make an appointment with a neurologist for Wynter. The back of her head seems to be indenting vertically alone the back of her head. But after a Ct/MRI, there is nothing “wrong” and no explanation. So we are hoping that more cranial sacral work and GROWING will help. He said to come back if anything changes.
17 months old: correct crawling, FINALLY
October 2008
18 Months: Wynter's “bone age test” came back different than her chronological age. This is a good thing: this means she does have the ability to “catch-up” in her growth. We also are doing her growth hormone stim test to see if the problem is Growth hormone (pituitary gland in the brain not producing gh) OR an IGf1 deficiency (the liver receptors not reading that it has growth hormone, and in turn not producing Igf1 to actually grow her). The Buddy Walk was a lot of fun. We were excited to be the top fund raising team this year and were very blessed with the prize of 2 round trip airlines tickets. I am also learning more about the changing mind foundation and more how the brain of kids with down syndrome really works...and what can be done to help them!
17 months old working on standing and cruising furniture (side stepping) and crawling
17 months old working on standing and cruising furniture (side stepping) and crawling
September 2008
17 months old: Wynter is crawling and butt scooting. She CAN crawl, but it is hard to get her to do it when she wants to scoot across the ground on her butt. She can also stack 4 blocks now. We met a new great pediatric endocrinologist. He immediately did some new tests that I had been wanting done, so I am encouraged that maybe we can get somewhere now. She had her optometrist appointment also. She said that her eyes are very healthy, but seems to be naturally very far sighted~ BUT has the ability to focus on her own for now without any correction. We will check again in 6 months.
August 2008
16 Months: We are busy doing fund raisers for the 2008 Buddy Walk (garage sale and eat at CICI's). We formed a team called Wynter's Waves to help raise money for the Down Syndrome Association of Central Texas. Zachary is starting mothers day out at Central (Round rock Christian Academy).
Wynter started blowing kisses and pointing at everything while saying “THIS”. She is pooping better this month. She also plays the “how big is Wytner” game :)
Wynter started blowing kisses and pointing at everything while saying “THIS”. She is pooping better this month. She also plays the “how big is Wytner” game :)
July 2008
15 months: Wynter weighs 17 lbs and is only 26 ½ inches long. She is learning the crawl pattern and how to jump in the jumperoo. She got her 11 tooth in this month and they are all looking pretty straight so far:)
She loves to dance. She can identify “nose”, and seems to know how to make herself urinate when you ask her to “potty”...really? We will see in time if this is real or just a coincidence. She is trying to mimic “I love you”.
She loves to dance. She can identify “nose”, and seems to know how to make herself urinate when you ask her to “potty”...really? We will see in time if this is real or just a coincidence. She is trying to mimic “I love you”.
June 2008
14 months old: still trying to figure out the lack of growing and what labs to do, and how to find a doctor that will see her as an individual and run the necessary tests, not just have an attitude of “she just has down syndrome”.
May 2008
13 months old: Wynter pulled herself up to stand, and she loves to spend time cruising around in her walker. She says mama, dada, buba (for Zach), “d” for done~ which she also signs, “b” with a point at a ball or a baby, and sometimes has a “p” sound for puppy.
April 2008 - 1 year old
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.
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.
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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