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!!!!
Showing posts with label year_two. Show all posts
Showing posts with label year_two. Show all posts
Monday, June 29, 2009
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.
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