Goldie is seldom is sick, so it is easy for me to slip into a mindset that we have beat the "low immunity" aspect of Down syndrome. And maybe she has, but what has yet to be conquered is the darn dysphagia. So, on Mother's day, I sung my baby girl through IV sticks (3) and breathing treatments while my would be dinner of pasture raised filet mignon and NY strip, still wrapped in white butcher paper, lay in a pool of red juice.
While Goldie may catch less than half of the bugs I do, her low fluid intake makes fighting what she does come down with very difficult. This is compounded by the increased difficulty in swallowing when her sinuses are draining. A cold was making its way through our house and I had been worried that she wasn't coughing as much as her siblings and that mucous was, instead, settling in her chest. Mother's intuition, trust it. When I got her to the ER Sunday morning her oxygen levels were in the low 80's! A chest x-ray showed that Goldie had pneumonia. The rest of the day included IVs, oxygen, breathing treatments, antibiotics, and an ambulance ride. Listening to some folksy kid's music on Pandora, we rounded out the afternoon snuggled up in the hospital bed for a nap.
Hank still needs me at night, so I left Goldie in the capable arms of her Daddy. Then, I drove home, crying and feeling torn between my children. Repeat all of this for night two and add in a couple middle of the night phone calls with Goldie SCREAMING in the background. While all of this really stunk, my husband mentioned how much closer he feels to his little girl and I have found even more trust in him as her father, advocate, and protector.
She is home. She is tired. A trip to the post office yesterday, yielded a three hour nap! As for the rest of us, Hank has a double ear infection, the nine year old woke up with the stomach flu, and my hubby worked over fourteen hours yesterday. (I'm thankful for that because it means he has a job and we need the money to cover visits to the hospital). My promise to him when he left earlier: I will not crack up, today.
Showing posts with label Goldie. Show all posts
Showing posts with label Goldie. Show all posts
Friday, May 13, 2011
Thursday, March 17, 2011
Happy Birthday! Goldie is 4
Goldie had a birthday last week! If you ask how old she is she will proudly hold up four fingers and say "four". After some practice she is even able to get her little thumb against the palm of her hand instead of behind her fingers. I never thought I would enjoy life's little details so much!
My favorite moment from her birthday this year: Goldie had done something she's not allowed, I don't remember what, and I was explaining why when out of nowhere she says, "Birthday. Four." and rooooolls her eyes. Like "Hello Mom, it's my birthday, I can't be in trouble. I get a free pass today!" Of course I cracked up after that, probably reinforcing whatever behavior I was trying to correct.
The last year has brought some big accomplishments! I'll list a few that I can think of off the top of my head.
- looking out for her brother (she was yelling "hurt" at him tonight as the went after an electric cord!)
- learning all the letters of the alphabet, upper and lowercase!
- asking and answering questions
- dressing herself
- beginning to sight read
- she can identify 9 different shapes and 10 colors
- growing tall enough to sit on the swing without help
- potty training, it has been over a month since we quit the pull-up habit!
- blowing bubbles
- turning door knobs
Wow! Just looking at this list has me excited for what the next year may bring!
Tuesday, November 30, 2010
Thursday, October 14, 2010
Inchstones
Goldie has met some little milestones, some call these inchstones, that I need to document before I forget the details. She is 3 1/2 and moving full steam ahead toward 4!
- Goldie can dress and undress herself, even in her brother's clothes. She mastered this skill completely on her own, all I did was leave baskets of laundry around for her to practice. BTW, she can also fold washcloths, handtowels, and diapers.
- Last night, upon noticing that her sisters were dressed for bed, she walked upstairs, got her pajama top and matching bottoms out of her drawer, came back down and threw them at me.
- At dinner, she served everyone salad, with tongs. Weeks of climbing on the table to get second helpings has finally paid off.
- At Children's Hour, they ran out of tiny plastic cups for snack time. So the kids had to drink out of regular styrofoam cups. I just knew that Goldie would need help. She told me to go away and drank two servings of apple juice without spilling or choking!
- Before snack, they had a visit from the fire department. When they asked for a volunteer to demonstrate "stop, drop, and roll" Goldie walked up to the front of the group, dropped to the ground and rolled. She was saying roll the whole time, then she stood up and clapped for herself. All the volunteer fire fighters knew her name before they went home. ;)
- Wishes do come true, I have another little girl who loves Madeline. My oldest was all about Madeline, so I've been saving all the dolls and books hoping they would get some more love.
- When I was reading "line", as Goldie calls her new favorite story, I stopped several times (leaving off the last word) and she was able to complete the rhyme! Another first!
- Goldie is really into learning her colors. She loves to sign and say them. She can sort red, blue, yellow, and green.
- Goldie can dress and undress herself, even in her brother's clothes. She mastered this skill completely on her own, all I did was leave baskets of laundry around for her to practice. BTW, she can also fold washcloths, handtowels, and diapers.
- Last night, upon noticing that her sisters were dressed for bed, she walked upstairs, got her pajama top and matching bottoms out of her drawer, came back down and threw them at me.
- At dinner, she served everyone salad, with tongs. Weeks of climbing on the table to get second helpings has finally paid off.
- At Children's Hour, they ran out of tiny plastic cups for snack time. So the kids had to drink out of regular styrofoam cups. I just knew that Goldie would need help. She told me to go away and drank two servings of apple juice without spilling or choking!
- Before snack, they had a visit from the fire department. When they asked for a volunteer to demonstrate "stop, drop, and roll" Goldie walked up to the front of the group, dropped to the ground and rolled. She was saying roll the whole time, then she stood up and clapped for herself. All the volunteer fire fighters knew her name before they went home. ;)
- Wishes do come true, I have another little girl who loves Madeline. My oldest was all about Madeline, so I've been saving all the dolls and books hoping they would get some more love.
- When I was reading "line", as Goldie calls her new favorite story, I stopped several times (leaving off the last word) and she was able to complete the rhyme! Another first!
- Goldie is really into learning her colors. She loves to sign and say them. She can sort red, blue, yellow, and green.
Thursday, October 7, 2010
Goldie Goes to Children's Hour
I've mentioned before that we are not sending Goldie to preschool this year. So, you may be wondering "What does she do?"
I decided to sign her up for a program at a local church called Children's Hour. Goldie goes once a week for 2 hours. My neighbor is her teacher and I'm the permanent helper in her class. It is an all volunteer program that one of my other children attended for two years. No one has any type of education background, let alone any special ed experience. My mom, who has worked in early childhood classrooms as long as I can remember, described it as "developmentally inappropriate." Which is why I love it!
There is no formal instruction or curriculum. No IEPs, no therapists to count how many times she gets something right. Just Goldie and 8 of her peers.
They do have free time with play-do or puzzles, opening songs, weather bear, craft, snack, gym or music, and a bible story.
I expected the first couple of months to be pretty rough. After an awful summer of "Story Time for Children of All Abilities" at the library, I set very low expectations. Sitting still while someone reads to a large group is not one of Goldie's abilities. Yet. I even second guessed my decision to sign her up for a program with only typical children and no adaptations. However, she has been doing great!
My proudest moments are when I see her at snack time, eating and DRINKING from a cup, and holding her hand as she walks down the steps. I had set a goal at the beginning of summer that she would be able to do both of these things by September. Goldie has worked so hard and I love to see the joy on her face when she has her own miniature cup of juice just like all her little friends. Sometimes, after snack is over, she'll sneak over and try to pour herself another drink.
During music, Goldie does all the hand motions that go with the songs or she and I use ASL signs. In the gym she has been able to do all of the activities with no more help than the other children need.
I've been observing how the children relate to each other. There are two boys that come together and I also bring my niece with us. I have yet to see the children really talk to each other and try to form new friendships. The boys stick together and my niece always wants to be near Goldie. Goldie is ready to be friends with anyone, especially the boys. She likes to sit by them and put her hand on their backs. One of them even seems to be looking out for her when she needs help.
The biggest challenge is craft time. The first week wasn't bad, just coloring and some tiny stickers. Then, they moved craft to a room with bins of toys. So, now she wants to ditch the hard fine motor work to go play in the toys. I keep redirecting her back to the craft table and try to give her enough help that it isn't overwhelming to her. At home she has shown a big interest in coloring. I keep a desk with paper, crayons, and markers in the kitchen for her. When they sent home a coloring page I put it on her desk. She sat down on her own and colored each flower yellow. This is the first time she has ever done anything like this! My pile of Goldie's artwork is growing.
At this point, I'm very happy with our decision and the activities we've chosen for Goldie. I think between Speech, OT, Children's Hour and our homeschool field trips, she's got plenty of learning opportunities, but she isn't over scheduled. Which is good for me too!
I decided to sign her up for a program at a local church called Children's Hour. Goldie goes once a week for 2 hours. My neighbor is her teacher and I'm the permanent helper in her class. It is an all volunteer program that one of my other children attended for two years. No one has any type of education background, let alone any special ed experience. My mom, who has worked in early childhood classrooms as long as I can remember, described it as "developmentally inappropriate." Which is why I love it!
There is no formal instruction or curriculum. No IEPs, no therapists to count how many times she gets something right. Just Goldie and 8 of her peers.
They do have free time with play-do or puzzles, opening songs, weather bear, craft, snack, gym or music, and a bible story.
I expected the first couple of months to be pretty rough. After an awful summer of "Story Time for Children of All Abilities" at the library, I set very low expectations. Sitting still while someone reads to a large group is not one of Goldie's abilities. Yet. I even second guessed my decision to sign her up for a program with only typical children and no adaptations. However, she has been doing great!
My proudest moments are when I see her at snack time, eating and DRINKING from a cup, and holding her hand as she walks down the steps. I had set a goal at the beginning of summer that she would be able to do both of these things by September. Goldie has worked so hard and I love to see the joy on her face when she has her own miniature cup of juice just like all her little friends. Sometimes, after snack is over, she'll sneak over and try to pour herself another drink.
During music, Goldie does all the hand motions that go with the songs or she and I use ASL signs. In the gym she has been able to do all of the activities with no more help than the other children need.
I've been observing how the children relate to each other. There are two boys that come together and I also bring my niece with us. I have yet to see the children really talk to each other and try to form new friendships. The boys stick together and my niece always wants to be near Goldie. Goldie is ready to be friends with anyone, especially the boys. She likes to sit by them and put her hand on their backs. One of them even seems to be looking out for her when she needs help.
The biggest challenge is craft time. The first week wasn't bad, just coloring and some tiny stickers. Then, they moved craft to a room with bins of toys. So, now she wants to ditch the hard fine motor work to go play in the toys. I keep redirecting her back to the craft table and try to give her enough help that it isn't overwhelming to her. At home she has shown a big interest in coloring. I keep a desk with paper, crayons, and markers in the kitchen for her. When they sent home a coloring page I put it on her desk. She sat down on her own and colored each flower yellow. This is the first time she has ever done anything like this! My pile of Goldie's artwork is growing.
At this point, I'm very happy with our decision and the activities we've chosen for Goldie. I think between Speech, OT, Children's Hour and our homeschool field trips, she's got plenty of learning opportunities, but she isn't over scheduled. Which is good for me too!
Wednesday, September 15, 2010
Saturday, August 7, 2010
Ka woop
Ka woop is how Goldie asked for more cantaloupe at dinner tonight. She even put a little pause in between syllables. It was so cute, we kept coaxing her to say it. Twice was all we got.
Her speech therapist has been working on vocabulary with her. To be honest, I'm not sure why. Well, not really, I do know Goldie has to understand words before she can begin to use them. But, I don't know if the ST realizes how many words Goldie knows. I had also hoped to see more oral motor activities being done. I asked for a copy of the treatment plan so I can get a better understanding of what strategies she's using and the goals they are working towards. For what its worth, I really like the ST. I've been very impressed that she has high and appropriate expectations of Goldie.
In the mean time, I decided to start keeping track of just what words Goldie can say. I started yesterday counting only spoken words, no matter how hard they were to understand. I was blown away that she used 87 different words!! I had no idea she was using that many. Today we weren't as diligent, but I noticed a bunch of words that she didn't say yesterday, so tomorrow we are going to keep track again. I also think its important that most of these were said without prompting. She either initiated the conversation or repeated them after I used them in a sentence. Goldie is not a "performer" so the best way to know where she is developmentally is to watch and interact with her during normal family routines.
Her speech therapist has been working on vocabulary with her. To be honest, I'm not sure why. Well, not really, I do know Goldie has to understand words before she can begin to use them. But, I don't know if the ST realizes how many words Goldie knows. I had also hoped to see more oral motor activities being done. I asked for a copy of the treatment plan so I can get a better understanding of what strategies she's using and the goals they are working towards. For what its worth, I really like the ST. I've been very impressed that she has high and appropriate expectations of Goldie.
In the mean time, I decided to start keeping track of just what words Goldie can say. I started yesterday counting only spoken words, no matter how hard they were to understand. I was blown away that she used 87 different words!! I had no idea she was using that many. Today we weren't as diligent, but I noticed a bunch of words that she didn't say yesterday, so tomorrow we are going to keep track again. I also think its important that most of these were said without prompting. She either initiated the conversation or repeated them after I used them in a sentence. Goldie is not a "performer" so the best way to know where she is developmentally is to watch and interact with her during normal family routines.
Saturday, May 1, 2010
The Morning After - Receiving Goldie's Diagnosis
We just celebrated Goldie's 3rd birthday. She certainly got the better end of the birthday deal. While she was busy licking icing and tearing open gifts, I began climbing Mt. Transition. Instead of snow, its covered in paperwork. I still haven't reached the top.
Last year, I posted Goldie's birth story, but didn't go into any detail about receiving her diagnosis. This year, I feel better able to talk about it. I can look back and see the best and the worst of myself. I've forgiven myself for the worst and let go of the guilt.
During my pregnancy there was some concern that Goldie wasn't growing well. I measured small for my dates and had to have another ultrasound. This was the 2nd level II ultrasound for that pregnancy. They were able to get some great pictures of her heart that they didn't get the first time. The tech thought she was in the 50% and would be about 7+ pounds. Maybe if she had hung out another 2 weeks, but instead she was only 6lbs 1oz and 18 inches long. Her head circumference was so small it wasn't on the growth chart.
I had the quad screen and it came back negative for an elevated risk of having a baby with DS. At the time, I didn't know it only screens your risk level and is not a definitive test. After working with breastfeeding mothers, I wanted to be able to anticipate any feeding difficulties or know if my baby would need extra attention after birth. We thought this test would meet that need. Turns out it didn't.
During my pregnancy I had a feeling that something wasn't right. I couldn't shake it and just kept telling myself it was anxiety. I spent the better part of my pregnancy in funeral homes, so it made sense to me that I was just being over anxious.
If I close my eyes I can still feel the first time I my skin met Goldie's. She was purple and spongy. The only thought I could form was "Why does my daughter have saggy skin like an elephant?" Out loud I said, "What's wrong with her skin. Doesn't she have enough fat on her? Were my dates wrong? Is she too early?" Down syndrome was the furthest thing from my mind.
The nurses kept reassuring me, telling me her Apgars were 8 & 9.
"Really?" the doctor said.
I stopped asking, distracted by the automated blood pressure cuff cutting off the circulation in my arm. My hand would curl into a ball while everyone just stared. I took it off, threw it on the floor and explained they would have to take my blood pressure the old fashioned way. (I'm not a good patient.) It was about this time our friendly nurse, Ann, clammed up. She wouldn't even look make eye contact with me.
Then it was time for Goldie to meet her sisters. Well, one of them, the other one was having a rough time.
I spent the night hiding Goldie under my nightgown, keeping her warm and hoping I could convince her to nurse. Hospitals in my neck of the woods still don't have rooming in. The nurse's aid came twice to bring Goldie to the nursery. No dice lady. Then a nurse who tried to help Goldie latch on. She asked if Goldie looked like my other babies. Finally, she patted me on the back and left.
Morning came and, again, the wanted Goldie in the nursery. This time the pediatrician was there to do the newborn health assesments.
"Great, I want him to come to my room to see my baby," I said.
"We don't do that."
"Ok. Then come get me and I'll bring her to the nursery."
"But, there's other babies in there. No ones ever asked to do this before."
"Your choices are he can check my baby here or I can bring her there. I don't send my 8 yo to the doctor alone. I'm not sending my newborn."
I let Goldie go to the nursery, so I could get a shower before seeing the doctor. But first I called my husband. That was the first time I cried. I planned on going home that evening, so he wasn't rushing in that morning. The plan was to wait until afternoon, then we could all go home together.
So, he wasn't there when I went to the nursery. Goldie wasn't with the other babies. She wasn't swaddled anymore. I could see a little gold bear on her chest to take her temperature, her stomach was bulging out in the center where the muscles didn't come together.
"I'm glad you asked to be here. Is you husband with you?" the doctor asked.
"No."
"I wish he was. Your daughter is showing some of the physical characteristics of Down syndrome."
The words echoed in my head for a few seconds. Then I knew I had to listen very carefully to everything he said because my daughter's health depended on it. The only things I could remember about Down syndrome were that it was an extra chromosome and it was forever.
The doctor and I, mostly I, formed a plan to get some nourishment into Goldie. Then I had to call her daddy. I still feel like crap for giving him such life changing news over the phone.
The next day we got our wish and were able to go home as a family.
It would be a week before we got the results of the bloodwork. A loooong week of crying, swearing, laughing and loving.
Our family pediatrician saw Goldie that day. I requested him that day because he is so compassionate and has a quietness about him that I enjoy. The room was filled with our family of 5, the doctor and at least on medical student.
"The results of the genetic testing came back and they show a triplication of the 21st chromosome."
After converting that to English in my head, I lost it. I bawled. I cried like I have never cried in front of so many people. Including my own children. I wish they hadn't been there. I was still crying when our van pulled out onto the main road. Finally, my husband said something that made me stop.
"You know, she's still our little girl. She's just like any other kid. She's going to take her first steps, say her first words and learn to ride a bike."
"Oh, yeah."
Last year, I posted Goldie's birth story, but didn't go into any detail about receiving her diagnosis. This year, I feel better able to talk about it. I can look back and see the best and the worst of myself. I've forgiven myself for the worst and let go of the guilt.
During my pregnancy there was some concern that Goldie wasn't growing well. I measured small for my dates and had to have another ultrasound. This was the 2nd level II ultrasound for that pregnancy. They were able to get some great pictures of her heart that they didn't get the first time. The tech thought she was in the 50% and would be about 7+ pounds. Maybe if she had hung out another 2 weeks, but instead she was only 6lbs 1oz and 18 inches long. Her head circumference was so small it wasn't on the growth chart.
I had the quad screen and it came back negative for an elevated risk of having a baby with DS. At the time, I didn't know it only screens your risk level and is not a definitive test. After working with breastfeeding mothers, I wanted to be able to anticipate any feeding difficulties or know if my baby would need extra attention after birth. We thought this test would meet that need. Turns out it didn't.
During my pregnancy I had a feeling that something wasn't right. I couldn't shake it and just kept telling myself it was anxiety. I spent the better part of my pregnancy in funeral homes, so it made sense to me that I was just being over anxious.
If I close my eyes I can still feel the first time I my skin met Goldie's. She was purple and spongy. The only thought I could form was "Why does my daughter have saggy skin like an elephant?" Out loud I said, "What's wrong with her skin. Doesn't she have enough fat on her? Were my dates wrong? Is she too early?" Down syndrome was the furthest thing from my mind.
The nurses kept reassuring me, telling me her Apgars were 8 & 9.
"Really?" the doctor said.
I stopped asking, distracted by the automated blood pressure cuff cutting off the circulation in my arm. My hand would curl into a ball while everyone just stared. I took it off, threw it on the floor and explained they would have to take my blood pressure the old fashioned way. (I'm not a good patient.) It was about this time our friendly nurse, Ann, clammed up. She wouldn't even look make eye contact with me.
Then it was time for Goldie to meet her sisters. Well, one of them, the other one was having a rough time.
I spent the night hiding Goldie under my nightgown, keeping her warm and hoping I could convince her to nurse. Hospitals in my neck of the woods still don't have rooming in. The nurse's aid came twice to bring Goldie to the nursery. No dice lady. Then a nurse who tried to help Goldie latch on. She asked if Goldie looked like my other babies. Finally, she patted me on the back and left.
Morning came and, again, the wanted Goldie in the nursery. This time the pediatrician was there to do the newborn health assesments.
"Great, I want him to come to my room to see my baby," I said.
"We don't do that."
"Ok. Then come get me and I'll bring her to the nursery."
"But, there's other babies in there. No ones ever asked to do this before."
"Your choices are he can check my baby here or I can bring her there. I don't send my 8 yo to the doctor alone. I'm not sending my newborn."
I let Goldie go to the nursery, so I could get a shower before seeing the doctor. But first I called my husband. That was the first time I cried. I planned on going home that evening, so he wasn't rushing in that morning. The plan was to wait until afternoon, then we could all go home together.
So, he wasn't there when I went to the nursery. Goldie wasn't with the other babies. She wasn't swaddled anymore. I could see a little gold bear on her chest to take her temperature, her stomach was bulging out in the center where the muscles didn't come together.
"I'm glad you asked to be here. Is you husband with you?" the doctor asked.
"No."
"I wish he was. Your daughter is showing some of the physical characteristics of Down syndrome."
The words echoed in my head for a few seconds. Then I knew I had to listen very carefully to everything he said because my daughter's health depended on it. The only things I could remember about Down syndrome were that it was an extra chromosome and it was forever.
The doctor and I, mostly I, formed a plan to get some nourishment into Goldie. Then I had to call her daddy. I still feel like crap for giving him such life changing news over the phone.
The next day we got our wish and were able to go home as a family.
It would be a week before we got the results of the bloodwork. A loooong week of crying, swearing, laughing and loving.
Our family pediatrician saw Goldie that day. I requested him that day because he is so compassionate and has a quietness about him that I enjoy. The room was filled with our family of 5, the doctor and at least on medical student.
"The results of the genetic testing came back and they show a triplication of the 21st chromosome."
After converting that to English in my head, I lost it. I bawled. I cried like I have never cried in front of so many people. Including my own children. I wish they hadn't been there. I was still crying when our van pulled out onto the main road. Finally, my husband said something that made me stop.
"You know, she's still our little girl. She's just like any other kid. She's going to take her first steps, say her first words and learn to ride a bike."
"Oh, yeah."
Tuesday, April 27, 2010
Goldie the Big Little Middle Sister
Her sisters call her the Little Middle Sister, but she is also one of Hank's big sisters. I think she loves all her sisterly roles. Goldie is almost always nice to Hank. We just have to watch because she will try to take care of him beyond what she is capable of. And I say "almost always nice" because there was the one day she dumped a glass of cold water on his head while he was sleeping. (Baptism - check.) Hey, it works to get rid of the cat.
So here are some pics I took this month of our Goldie girl.
Those are Hank's binkies in her mouth. I just wash them when she puts them down. I figure if we make a big deal out of it, she will too.
So here are some pics I took this month of our Goldie girl.
Thursday, March 25, 2010
The Brady Bunch
Goldie is all about the Brady Bunch. It started when I discovered that my girls had never met Mike and Carol, I immediately added Season 1 to our Netflix account. How could I know what a monster I was creating? Goldie, who would never watch anything other than Signing Time, sat for 1 1/2 hours watching the blended family bliss. The only word out of her mouth the entire time was "Alice". Everytime the credits roll she yells "Alice" and hits her head (ASL for "lettuce"). She began requesting "Alice" so much that I went out and bought her Season 1 and 2 for her birthday just so Netflix could have their DVD back. Finally, something we can all watch together.
Is it painfully obvious that we don't have cable or a dish?
And if you think Alice = lettuce is cute.
Bicycle = popsicle is almost as amusing.
Her sisters think the best part is when she starts dropping the "L" in Alice. Then you get A iss. So, its best to put her show on right away before she starts "swearing" at you!
Is it painfully obvious that we don't have cable or a dish?
And if you think Alice = lettuce is cute.
Bicycle = popsicle is almost as amusing.
Her sisters think the best part is when she starts dropping the "L" in Alice. Then you get A iss. So, its best to put her show on right away before she starts "swearing" at you!
Friday, February 5, 2010
New Words
After Hank was born, over 5 weeks ago, Goldie pretty much stopped talking. She resorted to whining and only using the words Mama and Dada. Because she needed to get our attention before she began whining at us.
This week she has been amazing me with the words. Not only is she saying more words, but her speech is getting clearer. This blog also serves as my record of her milestones, so I'm going to bore you with the details.
Goldie refolded some laundry for me and I asked her "What happened here?" She replied very carefully, "I did that."
At lunch we ate "am" (ham) Her shoes are "white"
Tonight she was dividing her time among several baby dolls. Then I noticed that she was making one of them wave his hand while she said "bye". A lot of her words sound like "bah", but it was cute to see her bending the baby's arm.
She gives her little brother fist bumps and was blowing raspberries in his face today. If he is crying and you don't get him settled down fast enough, Goldie will find a binky for him.
Another thing that I noticed, she stopped looking at her books after he arrived. She also wasn't very keen on letting me read to her. The last couple of days she has resumed emptying the bookshelf. I found her engrossed with her books, pointing at the pictures and signing to herself. Its so nice to see that she has made progress beyond what she was doing when Hank was born.
This week she has been amazing me with the words. Not only is she saying more words, but her speech is getting clearer. This blog also serves as my record of her milestones, so I'm going to bore you with the details.
Goldie refolded some laundry for me and I asked her "What happened here?" She replied very carefully, "I did that."
At lunch we ate "am" (ham) Her shoes are "white"
Tonight she was dividing her time among several baby dolls. Then I noticed that she was making one of them wave his hand while she said "bye". A lot of her words sound like "bah", but it was cute to see her bending the baby's arm.
She gives her little brother fist bumps and was blowing raspberries in his face today. If he is crying and you don't get him settled down fast enough, Goldie will find a binky for him.
Another thing that I noticed, she stopped looking at her books after he arrived. She also wasn't very keen on letting me read to her. The last couple of days she has resumed emptying the bookshelf. I found her engrossed with her books, pointing at the pictures and signing to herself. Its so nice to see that she has made progress beyond what she was doing when Hank was born.
Wednesday, February 3, 2010
When I Wasn't Looking
New babies are such a savory distraction from "life as usual". And while this mama was staring at new gray eyes and enjoying the aroma of milk breath her little girl learned some new tricks.
In the last two days I have found Goldie inhaling spices from opened jars and tonight we cleaned up a bottle of A1 sauce. It seems somebody has taught herself to unscrew lids.
While nursing Hank last week, I look over to see Goldie walking up the steps, unassisted. Her daddy swears she's been doing this for a while now.
The puzzle she insisted she wasn't ready for last week, it was completed with perfection today. Just for her OT.
When I ask "Who took Goldie's clothes off?" The answer is Goldie.
And when I say "Hey, thanks for putting Goldie's boots on." The response is "I didn't. She did."
But, I haven't missed everything. While I was watching my oldest spin around with Goldie hanging over her shoulder, I heard "I want down!"
Yesterday, while we were rolling playdough she said "Grace", her big sister's name, for the first time.
And when I look at this picture, Im reminded that "3" is just around the next bend.
In the last two days I have found Goldie inhaling spices from opened jars and tonight we cleaned up a bottle of A1 sauce. It seems somebody has taught herself to unscrew lids.
While nursing Hank last week, I look over to see Goldie walking up the steps, unassisted. Her daddy swears she's been doing this for a while now.
The puzzle she insisted she wasn't ready for last week, it was completed with perfection today. Just for her OT.
When I ask "Who took Goldie's clothes off?" The answer is Goldie.
And when I say "Hey, thanks for putting Goldie's boots on." The response is "I didn't. She did."
But, I haven't missed everything. While I was watching my oldest spin around with Goldie hanging over her shoulder, I heard "I want down!"
Yesterday, while we were rolling playdough she said "Grace", her big sister's name, for the first time.
And when I look at this picture, Im reminded that "3" is just around the next bend.
Sunday, December 27, 2009
Christmas pics
These are my favorites from the day. Daddy showing Goldie how to use her MP3 player.
She's got it!
She's got it!
Friday, December 18, 2009
Giving credit where credit is due
Goldie had her quarterly eval this week. I have to say it was fabulous! She has made so much progress in the last 3 months. She now knows over 100 signs and her speech is increasing slowly and steadily. Her fine motor skills have taken off and she is completing puzzles on her own along with beginning to draw. I could go on and on!
So, I was bragging about Goldie to a family member and their reply was "Are you going to do something in March, so she doesn't backslide, since you aren't sending her to preschool?"
Well, that caught me completely off guard. I explained, again, that our immediate family, has helped Goldie get to where she is today and we will continue to do so. And when I say we have helped Goldie, what I mean is that we give her opportunities and encouragement. Like you would with any child.
Goldie is the reason for her own success. I'm so tired of this idea that she would just be happy to sit and stare at the wall if it wasn't for Early Intervention. I remember reading books on DS when she was born that gave the very distinct impression that children with DS were not motivated to meet milestones or learn new skills on their own. Then the IFSP meeting came and the echoed those same thoughts. 2 1/2 years later I can say: what a bunch of BS!!
Here is our star! If you're wondering, she is putting cupcake picks into a pegboard to make a flower garden. Cute, huh?
So, I was bragging about Goldie to a family member and their reply was "Are you going to do something in March, so she doesn't backslide, since you aren't sending her to preschool?"
Well, that caught me completely off guard. I explained, again, that our immediate family, has helped Goldie get to where she is today and we will continue to do so. And when I say we have helped Goldie, what I mean is that we give her opportunities and encouragement. Like you would with any child.
Goldie is the reason for her own success. I'm so tired of this idea that she would just be happy to sit and stare at the wall if it wasn't for Early Intervention. I remember reading books on DS when she was born that gave the very distinct impression that children with DS were not motivated to meet milestones or learn new skills on their own. Then the IFSP meeting came and the echoed those same thoughts. 2 1/2 years later I can say: what a bunch of BS!!
Here is our star! If you're wondering, she is putting cupcake picks into a pegboard to make a flower garden. Cute, huh?
Monday, December 14, 2009
Nasonex
10 days ago I posted about Goldie still not being able to breathe, here. I just wanted to update that things are 100% better. The antibiotics weren't working so her ped had us stop them. Then she asked if we wanted to try Nasonex or Singulair. Nasonex is a nasal spray to reduce inflamation and Singulair would be an oral medication that also reduces inflamation. I opted for the nasal spray because I thought it would be best to treat just the problem area. Wow, what a difference it has made. After less than a week, she breathes quietly through her nose with no congestion. I don't know how long we'll have to keep using it, but for now I'm not messing with a good thing. Its only one spray per day and you don't build up a tolerance to it like OTC nasal sprays.
On the baby front, I'm 39 weeks and really uncomfortable. Apparently, most of my weight gain is just that, mine, the baby isn't expected to top 7 pounds. After doing some research, I found that my mom and my brother were both around 6 1/2 pounds. That put my mind at ease. As the midwife put it, "Your growing a baby that is the right size for you." Goldie was so much smaller than my first two and I always attributed it to the DS, maybe I need to rethink that. I should go to bed now, but even that is painful and I don't really sleep all that much anyway. Just mother nature's way of getting me ready for the big day!
On the baby front, I'm 39 weeks and really uncomfortable. Apparently, most of my weight gain is just that, mine, the baby isn't expected to top 7 pounds. After doing some research, I found that my mom and my brother were both around 6 1/2 pounds. That put my mind at ease. As the midwife put it, "Your growing a baby that is the right size for you." Goldie was so much smaller than my first two and I always attributed it to the DS, maybe I need to rethink that. I should go to bed now, but even that is painful and I don't really sleep all that much anyway. Just mother nature's way of getting me ready for the big day!
Wednesday, December 9, 2009
Friday, December 4, 2009
The Never Ending Search for Sleep
Its been 3 months since Goldie had her adenoids and tonsils out. Long story short, her sleep is worse than ever.
Eight weeks post op we were supposed to have another sleep study. I politely declined. Goldie seemed to be sleeping better, even though she is still a restless sleeper. I think it may be genetics and not the trisomy 21 kind. Its very common for me to be up with Goldie and hear one, or both, of her sisters talking in their sleep. Goldie has even started saying "No! No!" in her sleep.
Then, right at the eight week mark, I noticed Goldie's breathing was really noisy when putting her to bed. It sounded like she was getting a cold. Her sisters both had colds within a couple days. Even though nothing was draining from Goldie's nose, I used the saline drops and vaporizer trying to clear her congestion. That was 4 weeks ago. Since then we have tried antibiotics, herbal supplements, more drops with suction, and two antihistimines. Her breathing is still noisy and causing her to wake up all night. I called the ped today and she wants us to try a different type of antibiotic and if it hasn't improved by Monday to call back. I told her with the baby due soon, she would be seeing us either way!
I'm not crazy about giving her more antibiotics, but I thought we should try it before we head off to the ENT. And it doesn't help that she drinks just enough to survive. If this drags on until the baby arrives, I can always hope letting her nurse more will be the cure. Any other ideas?
Eight weeks post op we were supposed to have another sleep study. I politely declined. Goldie seemed to be sleeping better, even though she is still a restless sleeper. I think it may be genetics and not the trisomy 21 kind. Its very common for me to be up with Goldie and hear one, or both, of her sisters talking in their sleep. Goldie has even started saying "No! No!" in her sleep.
Then, right at the eight week mark, I noticed Goldie's breathing was really noisy when putting her to bed. It sounded like she was getting a cold. Her sisters both had colds within a couple days. Even though nothing was draining from Goldie's nose, I used the saline drops and vaporizer trying to clear her congestion. That was 4 weeks ago. Since then we have tried antibiotics, herbal supplements, more drops with suction, and two antihistimines. Her breathing is still noisy and causing her to wake up all night. I called the ped today and she wants us to try a different type of antibiotic and if it hasn't improved by Monday to call back. I told her with the baby due soon, she would be seeing us either way!
I'm not crazy about giving her more antibiotics, but I thought we should try it before we head off to the ENT. And it doesn't help that she drinks just enough to survive. If this drags on until the baby arrives, I can always hope letting her nurse more will be the cure. Any other ideas?
Sunday, November 22, 2009
What do you do all day?
As part of my baby preparations, I wrote down Goldie's routine for the day. My mom will be taking care of her and I want to make it as easy on both of them as possible. Plus, I can go into labor with a clear mind that Goldie's needs are being met. It may also come in handy if anyone stops by to help out after the baby is born.
I couldn't believe once I started how many little things I do for her. I also learned that while I may feel disorganized, we really do have a routine that we follow everyday. Its flexible, but consistent. It also answers the age old SAHM question, "What do you do all day? Don't you get bored?" I thought I would post just the morning to lunch portion, I don't want to completely bore you. If this doesn't seem like a lot, keep in mind that all this goes on while homeschooling my 2 older kids, making their lunch, etc...
So there you have it, a peak at the day in the life of Goldie!
I also did not intend this post to be about nutrition, supplements, or potty training. But, I realize people may have questions after reading it. I consider all of Goldie's supplements essential for her. She has to have probiotics and fish oil(Children's DHA) to avoid constipation. The fish oil and melatonin work together to help her sleep. We also see a difference in her speech and cognition when she is taking Ginkgo. As for potty traing, we aren't. We have practiced elimination communication since Goldie was 4 months old. Our road to being diaper free is just a little longer than most!
I couldn't believe once I started how many little things I do for her. I also learned that while I may feel disorganized, we really do have a routine that we follow everyday. Its flexible, but consistent. It also answers the age old SAHM question, "What do you do all day? Don't you get bored?" I thought I would post just the morning to lunch portion, I don't want to completely bore you. If this doesn't seem like a lot, keep in mind that all this goes on while homeschooling my 2 older kids, making their lunch, etc...
Goldie’s Schedule
6:30-8:00 Good Morning!
Potty -Right after she wakes up Goldie pees on the potty. She is usually dry in the morning.
Breakfast Goldie likes: - toast w/ raspberry jam or peanut butter
-Waffles w/ maple syrup to dip them in
-banana
-cereal w/ soy milk (feeds herself so use 2 bibs and a placemat)
- NO cheese, milk, or yogurt
Drink - 50/50 juice (white grape or oj) and water = 8 oz w/ 5 tsp Thick-It
- add 4 drops of Vitamin D (only added to morning drink)
Ginkgo - give .50 ml in the morning (not afternoon or evening)
Get dressed, puts her pajamas away in drawer
Playtime - read books, do puzzles, play babies, watch Signing Time, helps unload dishwasher and puts her dishes away.
10:00 Potty time and snack. Encourage Goldie to drink.
Lunch - 1 orange probiotic and ½ tsp Children’s DHA
- both are on door of refrigerator, use medicine syringe for DHA
-Goldie likes: leftovers from dinner, pb&j, fruit, salad, canned pasta, chicken, salty foods, tuna, and soup
Potty
Nap - Goldie is ready for a nap by 1:00.Sometimes sooner if she was up early. She likes to rock in the recliner and listen to her GloWorm (while I sing along). Sometimes we lay on my bed and I sing to her.
Potty - Goldie usually poops after her afternoon nap. Be patient this can take a long time. It’s a good time to read some books.
So there you have it, a peak at the day in the life of Goldie!
I also did not intend this post to be about nutrition, supplements, or potty training. But, I realize people may have questions after reading it. I consider all of Goldie's supplements essential for her. She has to have probiotics and fish oil(Children's DHA) to avoid constipation. The fish oil and melatonin work together to help her sleep. We also see a difference in her speech and cognition when she is taking Ginkgo. As for potty traing, we aren't. We have practiced elimination communication since Goldie was 4 months old. Our road to being diaper free is just a little longer than most!
Wednesday, November 4, 2009
Saturday, October 31, 2009
I did it.
I got the H1N1 vaccine yesterday. After many hours of research and debating in my head I decided to just get the shot. My PCP had them and they were mercury free so I went yesterday morning.
Boy, does everyone have an opinion about it too. I can't believe the reasons people were coming up with that I shouldn't get it. Like its a government conspiracy? Seriously?
Right now, it seems like everyone we know has swine flu. The pediatrician (solo practice) up the road was seeing 100 kids a day! I think we may have had it back in August. That was when I had bronchitis and took antibiotics and still coughed for 5 weeks. But, if that wasn't it, then I would really be in trouble if I did get it. Then again, if we did have it, why get a vaccine I don't need?
I know a lot of people say the media is making it out to be worse than it is. Well, after Goldie's surgery in September a woman who lives near us passed away from H1N1 complications (pneumonia). She was only 44. That was when I really started to worry. This was someone we knew. Not someone considered "at risk" or with health complications. I drive by her house everyday and think about her husband and daughters.
I'm also going to see if Goldie's ped has the vaccine available. She barely drinks enough as it is. I hate to think of her getting dehydrated again.
In the meantime, when we are out and about, we'll keep taking baths in hand sanitizer. Then scrubbing again at home. The truth is we did that most of the time anyway. I learned pretty fast that 3 sick kids is no fun. I don't care who thinks I'm crazy as I wipe down the highchair at the restaraunt. Because you know they won't be the ones scrubbing my carpets at 2 am or using a syringe to get fluids into a lethargic 2 year old. And you would be suprised by how dirty the tables are, let alone the highchairs!
Boy, does everyone have an opinion about it too. I can't believe the reasons people were coming up with that I shouldn't get it. Like its a government conspiracy? Seriously?
Right now, it seems like everyone we know has swine flu. The pediatrician (solo practice) up the road was seeing 100 kids a day! I think we may have had it back in August. That was when I had bronchitis and took antibiotics and still coughed for 5 weeks. But, if that wasn't it, then I would really be in trouble if I did get it. Then again, if we did have it, why get a vaccine I don't need?
I know a lot of people say the media is making it out to be worse than it is. Well, after Goldie's surgery in September a woman who lives near us passed away from H1N1 complications (pneumonia). She was only 44. That was when I really started to worry. This was someone we knew. Not someone considered "at risk" or with health complications. I drive by her house everyday and think about her husband and daughters.
I'm also going to see if Goldie's ped has the vaccine available. She barely drinks enough as it is. I hate to think of her getting dehydrated again.
In the meantime, when we are out and about, we'll keep taking baths in hand sanitizer. Then scrubbing again at home. The truth is we did that most of the time anyway. I learned pretty fast that 3 sick kids is no fun. I don't care who thinks I'm crazy as I wipe down the highchair at the restaraunt. Because you know they won't be the ones scrubbing my carpets at 2 am or using a syringe to get fluids into a lethargic 2 year old. And you would be suprised by how dirty the tables are, let alone the highchairs!
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