Sunday, October 31, 2010

31 for 21 - The Last Post for the Blog Challenge

     I sent up a post yesterday, late at night but, it went up as a post for today. Oh well, just so you know, my post entitled "Thankful For . . ." was done for yesterday.
     Today is the last day of the 31 for 21 Blog Challenge. Just in case some of you have forgotten, this was a challenge made by a 30-year-old mother that has a little daughter with Down syndrome (Trisomy 21). She has attempted to raise awareness about DS, one blog at a time. As a first-time participants in the blogging, I think it has gone quite well. There were 201 of us bloggers involved in this challenge. That means 201 folks writing something everyday for the past month - that's 6,231 BLOG POSTS!!!!
     If you just spend a little time clicking around on the list of people that undertook this challenge, I think you will see that all of us feel as if the person in our life with DS is a BIG blessing. Whether it is a child, a sibling or a friend, all of the folks with this extra chromosome seem to bring laughter, joy and happiness into t he lives of those they are with. Here is a list of the bloggers that took on the 31 for 21 Blog Challenge:


1. Unringing the Bell
2. Mindy
3. Elizabeth
4. RK
5. Got Down Syndrome
6. Mary aka Hurricane Riley
7. Michelle Adams
8. Sonia
9. Welcome to the Mad House
10. Starrlife
11. Phoenix's Mom
12. Michelle Z
13. Kimberly
14. Garden of Eagan
15. Beth at Our Typical Life
16. Cole
17. Christina and Prince Vince
18. Michelle (Big Blueberry Eyes)
19. Tina
20. Shelley
21. Re Jeneration S
22. Kristin Clark
23. Solveig
24. Muttering Mama
25. Maya
26. Amy
27. Lisa Connally-Coco Connally
28. Kris- T-21 and US
29. Deborah, Sunflower Stories
30. Debbie H.
31. Jodie
32. Chrystal
33. Amy
34. tracy 
35. Melissa Skavlem
36. Renee
37. Laura
38. Amy
39. Beth
40. Karen
41. Rachel 
42. Bill and Ria
43. Sweet Pea's Mommy
44. AZ Chapman female teen with CP
45. Sally Carter
46. Beth at Hannah's Shenanigans
47. Liz
48. Tiffany Larsen
49. Meredith Cornish
50. Melissa @ Moos Crossing
51. Bambi
52. Lots of Leggs
53. Cheryl
54. Cathy
55. Christie 
56. Sherry
57. Kaitlyn's Korner (Jenee)
58. Penny Putman
59. Erin Witkowski
60. Tonya (Live Laugh Love)
61. A' yani's Mommy
62. Kristin
63. Beverly 
64. Jo Ann Torres
65. Kim Fish
66. Gillian Marchenko
67. Suriyah Fish
68. Becca (The Bates Motel)
69. Ksri(My Life In Wonderland)
70. Kari(My Life In Wonderland
71. Lara
72. Opposite Kids
73. Lily's Life is Great!
74. Maggie @ Walkonthehappyside
75. erin purdy
76. Linda
77. tri21
78. Kristen {Faulkner Fam}
79. Katie
80. Jennifer
81. Kacey (Ella Grace)
82. Hanunyah Fish
83. Kayla
84. Julie
85. Lauren
86. Andi
87. Kristin Montgomery
88. Miriam Martinez
89. erika
90. Stevenson Family
91. Debbie Forand
92. Liz Morganroth
93. Tina
94. Braska Bear
95. Theo & Zhen's momma
96. Stephanie @ Ralphcrew
97. Su Su
98. Amy
99. Jo (you are the stuff dreams are made of)
100. Zoey's mom
101. Andrea-5 Reasons I Smile
102. Eunice at Halfway to Gorgeousness
103. cathy
104. Just a Little Bit Downsy by Tiffany
105. Katie
106. april narretto
107. Kelly 
108. Regina @
109. Cate
110. Krista 
111. Erin
112. Life is what you make it...
113. Lyn
114. Elizabeth
115. Jessie
116. Wendy P
117. Patti
118. Cheri 
119. Pudge and Zippy
120. Claudia
121. Suze Black
122. Rachel
123. Leslie
124. Michelle
125.Masarinmamman
126. lorena
127. 3boys2girls for us
128. Stephanie
129. Missy
130. Carrie Hutchinson
131. Kristi (Aaron's Mama)
132. Jacqulyn
133. Lady A
134. Crista
135. Erica
136. Suze
137. nichole
138. Donna
139. Michele
140. Kelli
141. Rachel
142. Stephanie Martinez
143. Jennie
144. Robin
145. Jennifer Hiatt
146. My Name is Sarah
147. Ezriyah Fish
148. Taylah Black
149. Polly
150. Ella's Mom
151. Anita
152. Anita@Choosing Joy
153. Kristin
154. Elias Mom from Mexico
155. Jill Kocian
156. Lisa, Bridget & Alina
157. Emily
158. Emily Neitzer
159. Michelle Enskat
160. Christy
161. susan
162. Windmills and Tulips
163. Sounds Like Life to Me
164. Kelly
165. Jen
166. Rachel at Raising resources!
167. sheva
168. A Godly Homemaker
169. tri21
170. Anna
171. savina pernisco
172. Anne
173. jan
174. Stacy ~ Twins with DS
175. Kim Yahara
176. Danielle
177. Sunny
178. Unexpected JOY 
179. Jen
180. Rachel
181. Mel
182. Kirsten 
183. Sharla
184. Your Bish - Better Late Than Never
185. Debra R.
186. Cerebral Palsy Family
187. Carrie With Children
188. Kari
189. Kim from Life At Big Sky Mountain
190. Chayla
191. Shaley Madsen
192. Mary Ellen
193. Ssejors
194. Ruth Einfeld
195. Jenny H
196. Laura R
197. Johnna
198. De Ann
199. elida robles
200. new balance
201. 5 Minutes for Special Needs

31 for 21 - Thankful For . . .

I am thankful for my little boy with down syndrome. He is such a blessing to me. I hope that over the past few weeks, you have seen that even though he is "special", he is just another one of my children. As I love them, I love him. As I teach them, I teach him. More tomorrow, Lord willing.

Friday, October 29, 2010

31 for 21 - The Small Things in Life

     Several days ago we found a small caterpillar making it's way along the ground out by the bunny barns. It was brightly colored and even struck a pose for us. It was if the green little thing was standing tall just for us to check him out. He stayed frozen in that position for quite some time - 2x, he did it. One time was long enough for us to go get the camera and snap a few pics.


 After our little picture taking adventure, we carried the caterpillar over to a tree and watched as it crawled up the tree trunk.

     This is just one event that reminds me of the joys of living out here where we do. It is such a blessing to be able to enjoy the beauty of nature around us. What a blessed place the Lord is letting us live in.

Thursday, October 28, 2010

31 for 21 - Therapy at Home

     Most of the things that we do with Osiyyah are just the normal types of things that we do with all of our children. The only area that O lacks in is his speech development due to poor muscle coordination. Because of this, we do some extra therapies at home with him. We also take him once a month to a speech therapist at the Tulsa Sunshine Center. O's main therapist, Lauren, has been a big blessing to us in regards to the things we do with O.
    A few days back my oldest daughter did a post on therapy at home. It was an excellent post and overview. Here is the link to that article - Therapy at Home.

Wednesday, October 27, 2010

31 for 21 - Pics From the Ranch

     As I said yesterday, here are some pics of the finished fryer rabbits we processed yesterday:
 Here are some close-ups. This first is the referred to as the skirt - this is what you would use to make Carne Asada, mmmm!
 Here are the legs and thighs which can be used in place of chicken in any recipe:
 The back strap meat, great for soup or maybe even the bbq:
 Ah, yes, the livers . . . um, anyone have a great liver recipe . . .
Here is a pic to show one thing that we do around here 2x a day -

Tuesday, October 26, 2010

31 for 21 - Busy Day

     Well, after school today we had a real life lesson on how to properly process a meat rabbit. It was very interesting to watch and learn how to do it. I'll try to post some pics tomorrow as I am not on my own computer right now and that's where the pics are.

Monday, October 25, 2010

31 for 21 - The Last Night

     We had a busy day loading some sheds up that we were getting from a couple that is moving out of state. So, I am ready to get to bed soon. I thought I would post a few pics of the fryer rabbits that we have been raising. I am hoping to learn how to process them tomorrow from another breeder that can do the job in 1 minute flat (per bunny)!
     About 2 weeks ago when these fryers were 7 weeks old, they weighed in at about 4.2 pounds. I plan on weighing them tomorrow and am hoping that they will be about 5.5 pounds. So, here are a few pics of the bunnies eating some fresh grass the other morning:


Sunday, October 24, 2010

31 for 21 - Pig Check-in

     Well, I know that I missed a post yesterday on the 31 for 21 blog challenge. Oh well, I was busy and assumed I had done it already. So, let me show you a few pics from our day today.
     We had a few folks show up today to buy either pigs or goats. We also went on a walk to check out my son's piglets. Here are a few pics from that:




Friday, October 22, 2010

31 for 21 - Castle Cupcake

   One thing we do at our place is hands on projects or activities for some of our home-school lessons. Today was another "letter c" day and so we looked at "castle" as the word of the day.
    After reading about castles and looking at pictures of them, we proceeded to "make" a castle - a Cupcake castle. Little Osiyyah was busy, busy making his as were the other kidos. Here are a few pics from the day:

Oh, I should mention that the cupcakes are wheat free. One of my daughter's has a blog with a lot of wheat free recipes. You can find that here - Hanunyah's Sweet Creations .

Thursday, October 21, 2010

31 for 21 - Breastfeeding a Baby with Down Syndrome

I thought I would post my article about 

Breastfeeding A Baby With Down Syndrome: 
One Mother's Experience

There is much to be said about nursing a baby with down syndrome. Probably the best way to sum it up is "lots of work". The most important thing is to not give up in trying to get the baby on the breast. Here is our story:
In February 2005 I gave birth to twins. Baby A was a boy weighing in at 5lbs 12oz. Baby B was a girl who weighed 5lbs 13oz. It was suspected after he was born that he had Down Syndrome and, it was confirmed by a chromosome test a week later. SInce I had nursed all of my previous children (9 of them), it was a no brainer that I would try to nurse the twins. Little did we realize how much work this was going to be. . .

I was unable to nurse our boy with DS the first few days because he was "out of it". I don't think he woke up or opened his eyes barely those first 2 days. When he finally did, he had all sorts of tubes going into or coming out of his little body, it was overwhelming. He was being "fed" an IV of various fluids and antibiotics were going in through his belly button. He also had to be under an oxygen tent and then had O2 coming out of his nose after that. Those 2 weeks in the NICU were a long 2 weeks.
Thankfully, we had an excellent group of nurses that I will always be thankful for. They put up with all of our questions and ideas and demands of things that we wanted to try yet, they also made sure that our little guy was being properly nourished. The first attempts at nursing him were difficult as he had little to no ability to suck (due to hypotonia). He would lay like a ragdoll in my arms with his arms hanging down at his sides. He never made any attempt to pick his hands up and place them at my breasts as he nursed. We had to force my nipple into his mouth and massage his cheeks and jaw to try to get him sucking. Then, it seemed, as soon as he would make an effort at sucking, he would fall back to sleep. We would strip him down, rub his feet, wipe him down with cold rags, poke him, prode him and even pinch his little heels. Many times it was to no avail because he would stay asleep. I would place him back in his little NICU crib, wrap him up in his little burrito blanket wrap and watch as the nurse hooked his feeding tube up to the gavage machine and systematically pump my milk into him. I would leave for a few hours, with tears running down my cheeks, to take care of his twin sister on the outside.
During this time, I was staying in a hotel close to the hospital going back and forth between the twins. I kept making sure that it was known that this baby was to never have a bottle. I wanted him to take to the breast and didn't want him to prefer sucking on a bottle over me. One of the head nurses even put a sign on his crib side that said "no bottle". So, it was try to nurse on me or have the gavage tube going from his nose to his stomach.
While I was at the hotel, I had a friend who was busy looking things up on the internet for me. She was looking for info on nursing a baby with DS. We eventually found out that our little guy would nurse better if I held him in basically a sitting position. Let's say I was nursing him on my right side - I would sit him on my right thigh, hold his head with my right hand and push his head onto my nipple. I actually had to put quite a bit of pressure on him to keep him latched on. If I didn't hold him on, he would just slip off of the nipple. With my left hand, I would help him open his mouth and also gently massage his cheeks to try to encourage him to nurse better. When he was done nursing, we would hold him upright for at least 30-45 minutes in order to let him digest his meal and try to prevent reflux from happening.
During this time, my husband began to think that we were getting nowhere, since the little guy always had a full belly (because of the gavage feedings). So, we came up with a plan and proposed it to Kathy (one of the head nurses). We asked if we could try to nurse him around the clock with no gavage feedings. We figured that if his little belly was hungry, we might be able to get him to nurse more at a feeding. She was all for it and gave us 24 hours to "prove" his ability, so to speak. The next day we began what we referred to as the "24-hour-boob-a-thon"!  We came into the NICU every 2 hours around the clock to nurse him. What a tiring time that was. My 2 oldest daughters were with me at the hotel. The hotel clerk must have thought we were nuts because we kept asking for wake-up calls every 2 hours. We would sleep for about an hour, wake-up, jump in our vehicle, race to the third floor of the NICU, nurse the baby then go back to the hotel and sleep for an hour. We had to prove to the doctors and nurses that he could breastfeed only in order for them to release him to us and let us take him home. During this nursing marathon, we also were weighing his diapers right before each feeding. This way we could see if he was actually intaking enough by measuring his output. After the 24 hours, Kathy was comfortable enough with what we were attempting to do and so, she pulled the gavage tube out of his nose. We still had several days ahead of us because the staff wasn't going to let him go home unless they were confident that he was going to survive on just the breast. Of course, this was only the beginning of our learning more about how much a baby with DS really needed to "survive". (See the section about weight gain to understand more about this).
After we returned to our house from the 2 weeks at the NICU, a lactation consultant contacted me. She wanted to use me as a case study because I was nursing twins and because one had DS. Together we began to figure out ways to get more milk down him. One way we discovered was to use his twin sister. We found that at times, we could let her nurse and bring the milk in, then take her off and put him on to nurse. Not only did this save him the extra work of sucking but, he was also able to benefit from the hind milk, which is way richer in fat than the foremilk.
The first time I met up with her, she also provided me with a breast pump and a device called an SNS (supplemental nursing system). This little unit was a major plus in getting some extra milk down at nursing time. Basically, the way it works is milk or formula is placed inside the bottle, a small tube is attached from the bottle to the mother's nipple, the bottle is inverted and hooked onto the mother's shirt at shoulder height and extra fluids can then come done the tube as the baby stimulates the nipple with his suckling. Using this machine, allowed us to get about an extra 20cc of milk down him at a nursing. This was a plus because at the time, we were going back to the hospital every 2 weeks for weight checks. Click here to see a picture of an SNS
We then were given a bigger SNS device, to try to get more down him. We figured, if he could handle it, maybe we could get him to eat more at a feeding and thus gain more (since this is what the hospital kept telling us they wanted). At this time, we were also learning more about the needs of a baby with down and actually began to learn that more, is not always better. With the larger SNS (2 tubes instead of 1 and also bigger in diameter), we found that it was to much for the baby to swallow at one time. He began to reflux greatly and choke and cough up more (see the section on GERD). Click here to see a picture of a bigger SNS
Another method that we tried was finger-feeding. The SNS feeder is used but, the tube is taped to your index finger. The finger is then inserted in the baby's mouth and the roof of the mouth is gently stimulated. The harder surface of the finger was easier at times for our little guy to suck on. Also, by rubbing the roof of the mouth, he was encouraged to develop his sucking ability. There are also things out there called nipple shields that can be worn directly on the woman's nipple to try to create a harder surface for the baby to latch onto. I tried these a few times but, preferred to finger feed him a few times a day. Click here to see a picture of a nipple shield
What we began to discover, is that a baby with DS cannot be compared to a baby without DS. It is already known that some babies with DS grow slower and ultimately, as an adult, most are shorter in stature than the average non-DS person. Most also suffer from hypotonia to some degree, so they tend to have a lower calorie need. Hence, they will typically not "need" as much food as an infant. This whole topic, of how much to try to get the baby to nurse and how much is actually necessary, is covered in our section on weight gain (coming soon, Lord willing).
As far as the area of nursing a baby with DS, we hope this article has been of some help to those of you who are wanting and willing to nurse your little one with DS. It is a longer road than a non-DS baby but, the benefits are well worth it. If we can be of any help or is you have any more questions as to how we did it (and are still doing it), please contact us at one of the following emails: kim@gotdownsyndrome.net or qf@gotdownsyndrome.net

Wednesday, October 20, 2010

31 for 21 - The Joy of Raising a Child with Down Syndrome!

My oldest daughter wrote the following in response to an article she read several years ago.
~~~~~~~~~~~~
The Joy of Raising a Child with Down Syndrome!
I read the article “What it Really Takes to Raise a Child with Down Syndrome” and something did not sit well with me about it. It is because I have a sweet little brother with Down syndrome and I have first-hand experience on what it takes to raise a child with Down syndrome. I do not know whether the author of this article does or not, but she did not give a very good picture of an individual with Down syndrome. This article did point out that there are a lot of therapies that are now available for those with Down syndrome, which is good.
There are a few things that I wish to point out:
~ “Then they are faced with the decision of whether or not they would be able to care for all of the needs of the baby by themselves. . . . Of course this article is in no way suggesting that you should not raise your own child, but instead it will highlight exactly what would be required on the part of the parent. It is up to the parent in order to decide if they can handle the situation or if they will need help, or if they just can not deal with the situation.”
This article surely is giving a perspective about Down syndrome that is not completely accurate. God is the one who creates every person, even those who have Down syndrome. Most any parent is capable of raising a child with a handicap. God is the one who has given that family the child with a handicap, whether it is Down syndrome, Cerebral Palsy, Spina Bifida, etc. It is extremely unfortunate though, that in our world, about 90% of babies with Down syndrome are murdered (aborted). I wish this weren’t so! But, part of the problem arises when doctors do not give the parents accurate and true information regarding Down syndrome. The information they give paints a sad, often inaccurate, picture. This is part of the problem with this article, as is shown below.
~ “First of all you will need to realize that someone will have to be with your baby all of the time. Even as they grow older they will need constant supervision and attention . . . One thing that parents need to keep in mind is that children with Down syndrome do not grow or learn at the same rate as other children their age.”
The above statements are just not true for the entire population with Down syndrome. There are some individuals who need much help, much supervision, and do not grow or learn at the same rate as other children their age. But, there are also other individuals who excel, who live on their own, who hold a job, who get married, who do grow and learn at the same rate as other children their age.
My brother does not need constant supervision because of his Down syndrome. He’s similar to any other two-year old. He’s not stupid, he understands a lot, actually. I understand that some situations may not make it capable for someone to give “constant supervision” to their child, if that is needed, but it is not always needed. Besides, with the world we live in today, there are many options available for parents. If someone really loved their child, whether they have DS or not, they would be willing to be there for them whenever their child needed them, given that the circumstance permits.
My brother with Down syndrome does grow at the same rate as his twin sister (who does not have DS). He does learn the same things she does. He is involved in everything the family does and he is not put off to the side to be able to do things that only he can do. If we would have listened to the negative information we received when my brother was diagnosed with DS, we may not have tried as hard to do certain things with him. He may have not learned to walk until over 2 years of age, but instead God blessed him and us and he learned to walk at 17 months (which isn’t too different than children without DS). You cannot listen to false and negative “expectations”, because there are many times when these are not true. There are some things which he is slower in and there are some things which he exceeds in more than she. But, what does that matter? There are children who do not have Down syndrome who are slower in learning and who don’t grow at the same rate as other children their age. My brother does require more work, care, patience, love and diligence, but I praise God for him and am so thankful to have a brother with Down syndrome.
One thing which my brother does exceed in more is his joy, his love and his happiness. He is so happy and content the vast majority of the time. He loves to give kisses to everyone and greet most who arrives at our house. He makes people smile when he looks at them with his big, round eyes, his chubby cheeks, his cute face that is totally part of his big smile and funny faces he makes. How can you resist such a sweet boy? It would be great if more people were as happy and content as he.
My point is that you cannot make a flat out statement with all of these “do not’s.” There are a lot of “do’s.”
~ “You will also have to get your child checked by their doctor on a regular basis. Most children who are born with Down syndrome also have other health problems or may develop additional health problems later on.”
This is true, that most children with Down syndrome are either born with health problems or develop them later on. This is, in part, why children with Down syndrome (as do other children) need a loving parent and family who are willing to do all they can for their child. My brother’s health problems have been minimal, all by God’s grace. But, thankfully, in this day-and-age, there is much which can be done for individuals with Down syndrome. Cardiologists for heart problems, ENT’s for ear, nose and throat problems, speech therapists for building the oral muscles and helping them speak, physical and occupational therapists to help with building their muscles and making them excel in both gross and fine motor skills, TNI to help their immune system and much, much more.
Sincerely,
Qadoshyah Fish
Sister to a wonderful little boy with Down syndrome!