Loving the sassy look, Brenda!Linda
My sister
Just a quick post on this beautiful Monday. My sister, Brenda is having her second round of chemo today. As predicted, she lost her hair right away. Just wanted you to see how she's rockin' her new look. What a trooper! She looks hot, right?
Please keep her in your thoughts and prayers~
Linda
Please keep her in your thoughts and prayers~
Linda
Fantastic Friday edited- sorry, Google Readers
I'm going to borrow/steal Megan's idea and make a list of things that I am happy about today.
Lila has started to climb on everything. It's a bit scary but exciting at the same time. She was crawling around the kitchen yesterday when I was making her lunch- I turned my back on her for what seemed like 2 seconds and when I turned around she was up on the kitchen table holding my cell phone. For a second I couldn't decide if I should take a picture or tell her no; I decided against the picture.
Lila has started eating with utensils at every meal. It takes more time, and it's very messy, but it's worth it. She loves being able to do it by herself.
Lila's speech is exploding. She is starting to put 3 words together at a time. It's awesome. She tries to imitate everything you say. So watch your language. : )
Lila was approved for the Virginia Medicaid EDCD Waiver. We haven't learned everything there is to learn about the program but so far it's proven to be very helpful. Lila's never had private OT because our insurance rolls PT and OT together. Because she's not walking we felt that we should use all of the sessions for PT. We are so blessed because our therapy center now accepts Medicaid. That means Medicaid is listed as the secondary insurance, picking up co-pays and now, for us, allowing Lila to go to OT. We start next month. Perfect timing. She gets OT at school, but since she didn't qualify for summer school, her therapies will all be covered over the summer at the therapy center, thanks to Medicaid. Thanks, Lord.
It makes me very happy that Lila loves school. She is always very excited to go, and when we turn the corner by the school, she points out the window, kicking her feet, saying "cool, cool".
I had a great home visit this week with Lila's teacher. She was telling me about Lila's interaction with the other kids, learning to take turns and share, saying numbers before the teacher does when they are counting, not wanting to sit in her "adaptive seating" chair because she wants to sit in a regular chair, and a few other exciting things about Lila's progress.
I am so thankful for my family relationships. It is sad to me how many people are estranged from their families or have very strained relationships with their families. We have our bumps, of course, like every family does. I am so thankful for their unconditional love.
Some of the blog posts I've been reading have made me very aware that we are so fortunate to have a great group of friends that have kids with DS. Many people don't even have one other family in their area to spend time with/get support from. We have many, and for that I am thankful. The online community is a beautiful support group as well!
In this crazy economy, I am thankful that my husband has a job and that I have a house to clean. HA!
One last thing. I'm so excited about this coming Mother's Day. All 3 of my kids will be home and that's the best present anyone could ever give me.
Lovin' life~
Linda
Lila has started to climb on everything. It's a bit scary but exciting at the same time. She was crawling around the kitchen yesterday when I was making her lunch- I turned my back on her for what seemed like 2 seconds and when I turned around she was up on the kitchen table holding my cell phone. For a second I couldn't decide if I should take a picture or tell her no; I decided against the picture.
Lila has started eating with utensils at every meal. It takes more time, and it's very messy, but it's worth it. She loves being able to do it by herself.
Lila's speech is exploding. She is starting to put 3 words together at a time. It's awesome. She tries to imitate everything you say. So watch your language. : )
Lila was approved for the Virginia Medicaid EDCD Waiver. We haven't learned everything there is to learn about the program but so far it's proven to be very helpful. Lila's never had private OT because our insurance rolls PT and OT together. Because she's not walking we felt that we should use all of the sessions for PT. We are so blessed because our therapy center now accepts Medicaid. That means Medicaid is listed as the secondary insurance, picking up co-pays and now, for us, allowing Lila to go to OT. We start next month. Perfect timing. She gets OT at school, but since she didn't qualify for summer school, her therapies will all be covered over the summer at the therapy center, thanks to Medicaid. Thanks, Lord.
It makes me very happy that Lila loves school. She is always very excited to go, and when we turn the corner by the school, she points out the window, kicking her feet, saying "cool, cool".
I had a great home visit this week with Lila's teacher. She was telling me about Lila's interaction with the other kids, learning to take turns and share, saying numbers before the teacher does when they are counting, not wanting to sit in her "adaptive seating" chair because she wants to sit in a regular chair, and a few other exciting things about Lila's progress.
I am so thankful for my family relationships. It is sad to me how many people are estranged from their families or have very strained relationships with their families. We have our bumps, of course, like every family does. I am so thankful for their unconditional love.
Some of the blog posts I've been reading have made me very aware that we are so fortunate to have a great group of friends that have kids with DS. Many people don't even have one other family in their area to spend time with/get support from. We have many, and for that I am thankful. The online community is a beautiful support group as well!
In this crazy economy, I am thankful that my husband has a job and that I have a house to clean. HA!
One last thing. I'm so excited about this coming Mother's Day. All 3 of my kids will be home and that's the best present anyone could ever give me.
Lovin' life~
Linda
Miss Lila
We had a playdate today. With a mom, a baby, and a typically developing 2 and 1/2 year old boy named Joseph. I have to admit, I was a little nervous about it. I was anxious about the playdate, wondering how the kids would interact, wondering if Joseph would get tired of playing with Lila and want us to leave. I had the same apprehension 2 weeks ago when we had a playdate with a mom, a baby and a pair of 2 and 1/2 year old typically developing twins, a girl named Cora and a boy named JJ. I was so worried that Cora and JJ would leave Lila in the dust. That she wouldn't be able to keep up with them. That there would be such a significant difference between her and them. I was so wrong.
What was I so worried about? Lila had a great time at both playdates, and guess what? So did the other kids. : ) Lila can't walk, and nobody even cared. She can talk, she can laugh, she can play. She can stack blocks, she can play ball, she can share. She can opt not to share. And sometimes that's what she does. Like any other kid.
Lila didn't qualify for the special education summer school, ESY, this year. We have been going back and forth on what we should do about this- should we accept the decision or should we fight? Will Lila be okay if she doesn't go to school over the summer? Sure, there are plenty of community activities that we could get involved in but all of them are for typically developing kids. Not kids like Lila. Wrong again. Lila is, for the most part, like any other kid. Sure, she's behind in some areas but who cares?
I am holding Lila back. I am scared to let her move forward. I am scared for her to be rejected. I am standing in her way. I will not continue to stand in her way.
Came across this article today. Thought it was pretty appropriate.
Growing up. As with so many parenting issues, this one is more complicated when it is about our child with a disability. We feel more susceptible to having our judgement questioned or challenged. Just as we take risks with our "typical" children, we must take reasonable risks with our child with a disability, even though our heart is in our throat.
Our own fear or uncertainty may be causing us to underestimate our child's capabilities. We may have bought in to the idea that protection is more important than learning, and that our child's safety can be guaranteed. These ideas cause us to avoid taking risks or permitting our child- whether still small or an adult- from taking necessary risks. Our challenge is to balance protection and risk, and to remember that risk is essential to learning and is a part of life for everyone.
Lord, please give me the wisdom and courage to Lila do the things and take the risks that will enable her to grow up to be the most competent person she can be. Help me not to stand in her way.
Loving and learning~
Linda
What was I so worried about? Lila had a great time at both playdates, and guess what? So did the other kids. : ) Lila can't walk, and nobody even cared. She can talk, she can laugh, she can play. She can stack blocks, she can play ball, she can share. She can opt not to share. And sometimes that's what she does. Like any other kid.
Lila didn't qualify for the special education summer school, ESY, this year. We have been going back and forth on what we should do about this- should we accept the decision or should we fight? Will Lila be okay if she doesn't go to school over the summer? Sure, there are plenty of community activities that we could get involved in but all of them are for typically developing kids. Not kids like Lila. Wrong again. Lila is, for the most part, like any other kid. Sure, she's behind in some areas but who cares?
I am holding Lila back. I am scared to let her move forward. I am scared for her to be rejected. I am standing in her way. I will not continue to stand in her way.
Came across this article today. Thought it was pretty appropriate.
Growing up. As with so many parenting issues, this one is more complicated when it is about our child with a disability. We feel more susceptible to having our judgement questioned or challenged. Just as we take risks with our "typical" children, we must take reasonable risks with our child with a disability, even though our heart is in our throat.
Our own fear or uncertainty may be causing us to underestimate our child's capabilities. We may have bought in to the idea that protection is more important than learning, and that our child's safety can be guaranteed. These ideas cause us to avoid taking risks or permitting our child- whether still small or an adult- from taking necessary risks. Our challenge is to balance protection and risk, and to remember that risk is essential to learning and is a part of life for everyone.
Lord, please give me the wisdom and courage to Lila do the things and take the risks that will enable her to grow up to be the most competent person she can be. Help me not to stand in her way.
Loving and learning~
Linda
Pics
Bubbles......
Miss Lila enjoying the nice weather last weekend
Working on those sensory issues- she was so hesitant at first but she ended up having a good time playing in the rocks!
Mother and daughter- girls night out on Saturday
My dear friend Kay and me!
The girls at the 9:30 Club
Breaking the rules... I think they dared me to do it
Hanging' at the 9:30 Club
My favorite place to hang out in Georgetown- Mr. Smith's Garden
Being silly at the Club
A quick note..............
Just a quick post as I am heading into DC with Tiffani and my friend Kay. Have I told you about my friend Kay? We lost touch for about 5 years and then found each other on Facebook. We used to work together at DynCorp many a moon ago. : ) She's absolutely one of my favorite people ever and I am thrilled that she is here for the weekend. We are headed in to window shop in Georgetown and then go to the Pat Greene concert at the 930 club tonight. Woot! Woot!
I wanted to post on Thankful Thursday and then again on Fantastic Friday but apparently I'll have to settle for Spectacular Saturday. (Tiffani said that these are lame but I don't care)
Here are some of the things that I am thankful for today:
beautiful weather
a supportive family
great friends
being married to my best friend
the best kids in the world
Have a great weekend!
Linda
P.S. I'm going to have acupuncture on Monday. Wish me luck!
I wanted to post on Thankful Thursday and then again on Fantastic Friday but apparently I'll have to settle for Spectacular Saturday. (Tiffani said that these are lame but I don't care)
Here are some of the things that I am thankful for today:
beautiful weather
a supportive family
great friends
being married to my best friend
the best kids in the world
Have a great weekend!
Linda
P.S. I'm going to have acupuncture on Monday. Wish me luck!
A borrowed entry
Here is a blog entry from one of my blogger friends- I thought it was so sweet that she posted this and I was hoping that we could get more votes for this inspirational mom.
From Beth at hannigans.blogspot.com:
Super Mom!!!
No, it's not me--I'm far from ever winning that title. But my friend Megan Blake is in the running!Megan is mom to two wonderful children, one of whom has Down syndrome. She lives in Richmond, and has been very active with the local Ds support group here. She always brings a smile wherever she goes (at least, all the places I see her go!).
Megan is also battling breast cancer. Her sweet demeanor belies a warrior's strength.
Megan has been nominated for Richmondmom.com's 1st ever "Super Mom" contest! I'm really hoping that she'll win. She says, "There are cool prizes (which she deserves), and I can squeeze in some Down syndrome advocacy to boot...very cool!"
Anyone (and EVERYONE) can vote for Megan. It's quick and easy, though it requires your name and address, as well as an email. I can't vouch for what marketing might result in this info--I used my "alternate" gmail address, and so far, no spam.
Here's the link to vote:
http://www.richmondmom.com/ Follow the link for Supermom '09. Nominees are listed in alphabetical order by name...and there are a lot!
Winners are chosen by the most votes, so don't forget to have your husbands and kids vote, and please feel free to pass this on to anyone who might be interested!!!! Voting ends April 26, winner announced April 27!
Thanks everyone!!!
Spread the love~
Linda
Two for Tuesday....
How 'bout that title, huh? Pretty lame I must admit. Oh, well.
We took Lila to the geneticist yesterday. We were a little late with the visit- a lot late is more like it. Typically you're supposed to take your child with DS to the geneticist every 6 months until the age of 3, then scale back to once a year. The last time Lila saw the geneticist was when she was 6 months old. She was scheduled for an appointment when she was 12 months old but she was very sick that day and we had to cancel. There is a 6 month wait period for appointments. Given the fact that Lila was already being followed by a developmental pediatrician, an opthamologist, a pediatric dentist, a gastroenterologist, a cardiologist, a hematologist, an ENT, a speech therapist, a physical therapist.... okay, okay, you get the picture. Maybe it was wrong but we decided it was all a bit much. We decided to take a break from the geneticist for a while. Now that I think back on it I'm not sure why we decided to do that. We really, really like our geneticist.
When I was 3 months pregnant with Lila we were given an emergency appointment with her. We had just received the results of the amnio and our new OB thought it would be helpful for us to talk with her. She was absolutely wonderful. (We were so ignorant- even though at 11 weeks we had a nuchal with the result of a 20% chance of having a baby with DS- I had chosen not to do any research. I had accepted the fact that I was probably going to have a baby with DS but I was still trying to deal with the initial feelings at that point.) I remember asking the geneticist when we would know how much our baby would be able to accomplish in her life- she just smiled and said "At the end of her life, you'll know. Give her every opportunity to accomplish as much as she can and you'll be amazed at what she can do." WOW! After our first OB tried to schedule the termination of my pregnancy as soon as possible, this lady was like a breath of fresh air. Thank you God. That's exactly what we needed to hear. Hope. She also came to see Lila in the NICU and was very encouraging. But to get back to yesterday, she was excited to see us. Who am I kidding? She was glad to see Lila. She did make a comment that it had been a "long time." oops.....
After asking a ton of questions she was very pleased with our answers but more importantly she was pleased with Lila's progress. When she looked in Lila's eyes with the ophthalmoscope, she started laughing. "Somebody must take tons of pictures of this little girl- when she saw the light she started smiling like crazy!" : )
It is 10:00 EST and I must go to bed now. The steroids are making me a bit fuzzy so please pardon the fact that this post is all over the place.
Hugs~
Linda
P.S. I had to google the spellings of ophthalmoscope and gastroenterologist. : ) Just had to confess.
We took Lila to the geneticist yesterday. We were a little late with the visit- a lot late is more like it. Typically you're supposed to take your child with DS to the geneticist every 6 months until the age of 3, then scale back to once a year. The last time Lila saw the geneticist was when she was 6 months old. She was scheduled for an appointment when she was 12 months old but she was very sick that day and we had to cancel. There is a 6 month wait period for appointments. Given the fact that Lila was already being followed by a developmental pediatrician, an opthamologist, a pediatric dentist, a gastroenterologist, a cardiologist, a hematologist, an ENT, a speech therapist, a physical therapist.... okay, okay, you get the picture. Maybe it was wrong but we decided it was all a bit much. We decided to take a break from the geneticist for a while. Now that I think back on it I'm not sure why we decided to do that. We really, really like our geneticist.
When I was 3 months pregnant with Lila we were given an emergency appointment with her. We had just received the results of the amnio and our new OB thought it would be helpful for us to talk with her. She was absolutely wonderful. (We were so ignorant- even though at 11 weeks we had a nuchal with the result of a 20% chance of having a baby with DS- I had chosen not to do any research. I had accepted the fact that I was probably going to have a baby with DS but I was still trying to deal with the initial feelings at that point.) I remember asking the geneticist when we would know how much our baby would be able to accomplish in her life- she just smiled and said "At the end of her life, you'll know. Give her every opportunity to accomplish as much as she can and you'll be amazed at what she can do." WOW! After our first OB tried to schedule the termination of my pregnancy as soon as possible, this lady was like a breath of fresh air. Thank you God. That's exactly what we needed to hear. Hope. She also came to see Lila in the NICU and was very encouraging. But to get back to yesterday, she was excited to see us. Who am I kidding? She was glad to see Lila. She did make a comment that it had been a "long time." oops.....
After asking a ton of questions she was very pleased with our answers but more importantly she was pleased with Lila's progress. When she looked in Lila's eyes with the ophthalmoscope, she started laughing. "Somebody must take tons of pictures of this little girl- when she saw the light she started smiling like crazy!" : )
It is 10:00 EST and I must go to bed now. The steroids are making me a bit fuzzy so please pardon the fact that this post is all over the place.
Hugs~
Linda
P.S. I had to google the spellings of ophthalmoscope and gastroenterologist. : ) Just had to confess.
Monday morning catch-up
I feel like I've been running around in circles for over a week. The pinched nerve in my back has actually been diagnosed as Lumbar Radiculitis. Sounds a little crazy, I know. Ridiculous. The actual definition of radiculitis: Radiculitis is a type of pain that radiates down and along the sciatic nerve. And boy does it hurt. Thankfully it has gotten better. I've actually slept in my own bed for the past 3 nights, instead of sleeping on the physical therapy table in Lila's playroom. Things are definitely looking up. I'm currently on steroids, hydrocodone at night, and Aleve during the day. The doctor wants me to go for physical therapy 2 times a week for 4 weeks but I'm thinking about trying acupuncture instead. I'll decide by the end of the day. So there's the update on that. I feel like I haven't blogged in forever- I keep getting e-mails, text messages and FB messages asking what's going on with me. Sorry I've been so unresponsive.
As for my breast sono, I went for the test last Wednesday. After the tech was finished she went out to consult with the doctor. I fell sound asleep on the table. (That's where I got the idea to sleep on Lila's PT table.) When the tech came back in she asked why my doctor hadn't ordered everything that they had requested. Obviously I had no idea what she was talking about so the look on my face must have been a look of total confusion. She said that they had asked for a breast sono AND a follow-up mammogram to be ordered but only the sono was on the paperwork. I was still half asleep and told her it was probably because he doesn't pay attention. ( We seriously need to find a new family doctor- this is about the 7th major thing he has dropped the ball on. I won't go into all that because this post would be a total doctor-bashing.) So they called his office and I waited for approval to be granted for a follow-up mammogram. I have my regularly scheduled mammogram done at another office and they wanted everything on file at their practice- made sense to me. I had another mammo done and was sent to wait yet again. At this point I'm feeling a little nervous- okay, a lot nervous. Why do they need all these different views? Different tests? Is this really bad? How will I take care of Lila if I have to have surgery and/or go through chemo? Will I live? God- surely you wouldn't do that- I have to take care of Lila! So, yeah, sitting and waiting and waiting and waiting I had WWWAAAAYYYY too much time to think. Turns out the reason they needed all of the tests/views wasn't bad at all. The two spots that showed up on the MRI weren't showing up on the sono or the mammo. Apparently they are too small to be seen on either of those tests, or they aren't there at all. They want me to have another MRI in 6 months. I'm taking this as totally good news. Thanks for all of your prayers, messages and phone calls. I definitely felt the love. : )
In the midst of all this, I got another yeast infection. Funny, huh? A yeast infection while I was on the no-yeast diet. My yeast infection wasn't directly related to the no-yeast diet, but the diet was tugging away at my already weakened immune system. Apparently it was too drastic for me. I am currently on the South Beach diet- I am determined to shed this extra weight.
Lila and her daddy went to New York to visit his parents last Thursday. The Easter weekend trip is a tradition for us- on Good Friday we make "Easter pies" with Nick's parents and his cousins Jim and Jen. I absolutely love all of it- we have so much fun making the pies and after we're finished Nick's sister, brother and their families usually come over and we eat pizza and hang out. I was sorry to miss the trip but I knew that it wasn't a good idea for me to go with my pinched nerve causing so much pain. The trip is 5 hours each way so it probably would not have been pleasant for me. Lila and Nick had a lot of fun and I'm glad they went even though I missed them so much. Wow- this house was so quiet with just Tiffani and me here. Before they left I was packing up all of Lila's vitamins/supplements. Nick asked how he was going to remember it all so I wrote it down for him. On the first night they were there when Nick called I asked if he had remembered to give her the afternoon zinc and Ambrotose- a nutritional supplement that she's on. He said- "Oh yeah, I remembered. And I went ahead and gave her all 3 vitamins, all 3 DHA gummies and the rest of the zinc. I was scared I would forget so I just got it all over with at once. " Charming, isn't he?
Okay, I promise I'm almost finished- if you're still with me. Lila had an ENT appointment last Thursday before she left with her daddy for NY. At our last visit with the pediatrician, I was concerned about an ear infection but it's so hard to tell with her. She's ALWAYS congested, no matter what we do. She constantly chews on her fingers whether she's teething or not. She has never grabbed her ears., she just gets cranky. So anyway, he looked in her ears. Right ear clear. Left ear- can't tell- too much wax to see but the wax is too far in and he's not going to attempt to clear it out. He asked me if we had an ENT visit scheduled anytime soon. As a matter of fact, yes. Within a week. He told me to have the ENT clean her ears, check the left ear for fluid and check out her tonsils as they are enlarged. So we went to the ENT with the following concerns:
Chronic congestion
Possible infection in left ear
Speech sounds different within the last 3 weeks- sounds like she's not hearing clearly
Interrupted sleep patterns- doesn't seem like she actually stops breathing, there's just a lull
Enlarged tonsils
We actually had an appointment with a nurse practitioner- we didn't want to wait 6 weeks to see the ENT. The NP cleaned Lila's ears, then looked in both of them- didn't see any fluid but it's hard to see because Lila's ear canals are so incredibly small. Typical for kids with DS, so no big deal. She looked in Lila's throat- agreed that her tonsils and considerably large. Probably adding to the congestion issues. We also discussed Lila's sleep interruption- she instructed us to do a home video of Lila sleeping. From that video it will be decide whether or not we need to do a sleep study. She sent us back to the audiologist for a tympanometry- where they place the soft plug into the ear to test for eardrum movement. Lila sat with her daddy and was perfectly still for the test- miracle. Right ear- no response. Left ear- no response. The audiologist looked puzzled, changed the tip on her instrument and tried again. Still no response from either ear. I asked what this meant. She asked if Lila's ever had a hearing test- yes- 5 of them to be exact. 1 of them right here in your office. She's never had any hearing issues? No. Again I asked what this meant. She asked us to wait in the waiting room, that she needed to talk to the NP. We wait, she came out and told us that the test results made sense because the NP couldn't be sure whether or not there was fluid present because she couldn't see that well. Really? I said well, based on the test results, do you think she has an infection? Should we be concerned? Should she be on antibiotics? No, just follow up with the ENT in 3 weeks. Doesn't make much sense to me but we are keeping a close eye on her for signs of infection- like crankiness. Then last night Tiffani and I were trying to get a video of her singing "He's got the whole world in His hands". It's so cute and I will keep trying to get it on video. As soon as she sees the camera she stops singing. So instead of singing we were trying to get her to do animal sounds and signs. I was asking her what a dog says and she kept quacking like a duck. Obviously those sounds are close to one another but she's never gotten them confused before- and after I got closer to her and said "dog" more loudly she made the dog sign and sound. This all makes me a bit nervous- the NP said that we could be facing tonsil & adenoid removal along with tube placement in both ears sooner than later. We'll find out more when we see the ENT on May 4th.
This has certainly been a long post. I hope you all had a Happy Easter- we certainly did.
Have a fabulous day~
Linda
As for my breast sono, I went for the test last Wednesday. After the tech was finished she went out to consult with the doctor. I fell sound asleep on the table. (That's where I got the idea to sleep on Lila's PT table.) When the tech came back in she asked why my doctor hadn't ordered everything that they had requested. Obviously I had no idea what she was talking about so the look on my face must have been a look of total confusion. She said that they had asked for a breast sono AND a follow-up mammogram to be ordered but only the sono was on the paperwork. I was still half asleep and told her it was probably because he doesn't pay attention. ( We seriously need to find a new family doctor- this is about the 7th major thing he has dropped the ball on. I won't go into all that because this post would be a total doctor-bashing.) So they called his office and I waited for approval to be granted for a follow-up mammogram. I have my regularly scheduled mammogram done at another office and they wanted everything on file at their practice- made sense to me. I had another mammo done and was sent to wait yet again. At this point I'm feeling a little nervous- okay, a lot nervous. Why do they need all these different views? Different tests? Is this really bad? How will I take care of Lila if I have to have surgery and/or go through chemo? Will I live? God- surely you wouldn't do that- I have to take care of Lila! So, yeah, sitting and waiting and waiting and waiting I had WWWAAAAYYYY too much time to think. Turns out the reason they needed all of the tests/views wasn't bad at all. The two spots that showed up on the MRI weren't showing up on the sono or the mammo. Apparently they are too small to be seen on either of those tests, or they aren't there at all. They want me to have another MRI in 6 months. I'm taking this as totally good news. Thanks for all of your prayers, messages and phone calls. I definitely felt the love. : )
In the midst of all this, I got another yeast infection. Funny, huh? A yeast infection while I was on the no-yeast diet. My yeast infection wasn't directly related to the no-yeast diet, but the diet was tugging away at my already weakened immune system. Apparently it was too drastic for me. I am currently on the South Beach diet- I am determined to shed this extra weight.
Lila and her daddy went to New York to visit his parents last Thursday. The Easter weekend trip is a tradition for us- on Good Friday we make "Easter pies" with Nick's parents and his cousins Jim and Jen. I absolutely love all of it- we have so much fun making the pies and after we're finished Nick's sister, brother and their families usually come over and we eat pizza and hang out. I was sorry to miss the trip but I knew that it wasn't a good idea for me to go with my pinched nerve causing so much pain. The trip is 5 hours each way so it probably would not have been pleasant for me. Lila and Nick had a lot of fun and I'm glad they went even though I missed them so much. Wow- this house was so quiet with just Tiffani and me here. Before they left I was packing up all of Lila's vitamins/supplements. Nick asked how he was going to remember it all so I wrote it down for him. On the first night they were there when Nick called I asked if he had remembered to give her the afternoon zinc and Ambrotose- a nutritional supplement that she's on. He said- "Oh yeah, I remembered. And I went ahead and gave her all 3 vitamins, all 3 DHA gummies and the rest of the zinc. I was scared I would forget so I just got it all over with at once. " Charming, isn't he?
Okay, I promise I'm almost finished- if you're still with me. Lila had an ENT appointment last Thursday before she left with her daddy for NY. At our last visit with the pediatrician, I was concerned about an ear infection but it's so hard to tell with her. She's ALWAYS congested, no matter what we do. She constantly chews on her fingers whether she's teething or not. She has never grabbed her ears., she just gets cranky. So anyway, he looked in her ears. Right ear clear. Left ear- can't tell- too much wax to see but the wax is too far in and he's not going to attempt to clear it out. He asked me if we had an ENT visit scheduled anytime soon. As a matter of fact, yes. Within a week. He told me to have the ENT clean her ears, check the left ear for fluid and check out her tonsils as they are enlarged. So we went to the ENT with the following concerns:
Chronic congestion
Possible infection in left ear
Speech sounds different within the last 3 weeks- sounds like she's not hearing clearly
Interrupted sleep patterns- doesn't seem like she actually stops breathing, there's just a lull
Enlarged tonsils
We actually had an appointment with a nurse practitioner- we didn't want to wait 6 weeks to see the ENT. The NP cleaned Lila's ears, then looked in both of them- didn't see any fluid but it's hard to see because Lila's ear canals are so incredibly small. Typical for kids with DS, so no big deal. She looked in Lila's throat- agreed that her tonsils and considerably large. Probably adding to the congestion issues. We also discussed Lila's sleep interruption- she instructed us to do a home video of Lila sleeping. From that video it will be decide whether or not we need to do a sleep study. She sent us back to the audiologist for a tympanometry- where they place the soft plug into the ear to test for eardrum movement. Lila sat with her daddy and was perfectly still for the test- miracle. Right ear- no response. Left ear- no response. The audiologist looked puzzled, changed the tip on her instrument and tried again. Still no response from either ear. I asked what this meant. She asked if Lila's ever had a hearing test- yes- 5 of them to be exact. 1 of them right here in your office. She's never had any hearing issues? No. Again I asked what this meant. She asked us to wait in the waiting room, that she needed to talk to the NP. We wait, she came out and told us that the test results made sense because the NP couldn't be sure whether or not there was fluid present because she couldn't see that well. Really? I said well, based on the test results, do you think she has an infection? Should we be concerned? Should she be on antibiotics? No, just follow up with the ENT in 3 weeks. Doesn't make much sense to me but we are keeping a close eye on her for signs of infection- like crankiness. Then last night Tiffani and I were trying to get a video of her singing "He's got the whole world in His hands". It's so cute and I will keep trying to get it on video. As soon as she sees the camera she stops singing. So instead of singing we were trying to get her to do animal sounds and signs. I was asking her what a dog says and she kept quacking like a duck. Obviously those sounds are close to one another but she's never gotten them confused before- and after I got closer to her and said "dog" more loudly she made the dog sign and sound. This all makes me a bit nervous- the NP said that we could be facing tonsil & adenoid removal along with tube placement in both ears sooner than later. We'll find out more when we see the ENT on May 4th.
This has certainly been a long post. I hope you all had a Happy Easter- we certainly did.
Have a fabulous day~
Linda
Happy Easter!
I hope to catch up on blogging soon. Until then, I wanted to post some pictures of Lila in her Easter dress.
Lila and her daddy
Lila and her Easter bunny
Right after I got this shot she tossed the flower across the room.
Striking a pose- she's so sick of pictures!
As I take more and more pictures, I am convinced that I want a new camera. A better camera. Oh, and to sign up for a photography class.
Hope everyone had a Happy Easter.
Sending love on such a blessed day~
Linda
Lila and her daddy
Lila and her Easter bunny
Right after I got this shot she tossed the flower across the room.
Striking a pose- she's so sick of pictures!
As I take more and more pictures, I am convinced that I want a new camera. A better camera. Oh, and to sign up for a photography class.
Hope everyone had a Happy Easter.
Sending love on such a blessed day~
Linda
In the News
AUGUSTA (AP) -- A pair of special Maine high school basketball players got a surprise when they were interviewed on the CBS Early Show. Patrick Thibodeau of Greely High School and Josh Titus of Edward Little High School, whose court exploits drew widespread attention this season, were invited to the Boston Celtics' summer basketball camp during Thursday's airing. Thibodeau, who has Down syndrome, shot a 3-pointer for the second basket of the game then hit another at the final buzzer. Titus, who has autism, entered the game in the fourth quarter and made four baskets, including a 3-pointer that sent the home crowd into a frenzy. Maine McDonald's owners sent the two boys and their parents to the NCAA Final Four games in Detroit last weekend.
Linda
Beautitudes of the Exceptional Child
Blessed are you who take time to listen to defective speech, for you help us to know that if we persevere, we can be understood.
Blessed are you who walk with us in public places and ignore the stares of strangers, for in your companionship we find havens of relaxation.
Blessed are you that never bids us "hurry up" and more blessed are you that do not snatch our task from our hands to do them for us, for often we need time rather than help.
Blessed are you who stand beside us as we enter new ventures, for our failures will be outweighed by times we surprise ourselves and you.
Blessed are you who ask for our help, for our greatest need is to be needed.
Blessed are you when by all these things you assure us that the thing that makes us individuals, is not our peculiar muscles, nor our wounded nerves system, but is the God-given self that no infirmity can confine.
Blessed are those who realize that I am human and don't expect me to be saintly just because I am disabled.
Blessed are those who pick things up with out being asked.
Blessed are those who understand that sometimes I am weak and not just lazy.
Blessed are those who forget my disability of the body and see the shape of my soul.
Blessed are those who see me as a whole person and not as a "half" and one of God's mistakes.
Blessed are those who love me just as I am without wondering what I might have been like.
A Poem
A FRIEND LIKE ME
By Tracey Porreca
Please don't be afraid of me
I want to be your friend.
And if you get to know me
Your rigid thoughts might bend
By Tracey Porreca
Please don't be afraid of me
I want to be your friend.
And if you get to know me
Your rigid thoughts might bend
Thoughts that I am different
From others that you know,
I really am no different
And this I'd like to show
I live and breathe and laugh and cry
I love to play and learn,
I sometimes do things differently
Which can cause some concern
You see, some say I'm special
I guess this much is true,
But if you were to ask me
I'd say you're special too
We're all a little different
No two are just the same,
It's really something wonderful
that way there is no blame
When things don't go just perfectly
And others get confused,
And say things like "poor child"
and other terms they use
It's okay if you look at me
And might not understand,
It's okay if you touch me
And even hold my hand
My life has many obstacles
Much more than you could know,
But that's not what I dwell on
I'm me, that's all, and so...
Please don't be afraid of me
I want you just to see,
How truly great and wonderful
A friend like me can be
~~~~~~~~~~~~~~~
Tomorrow (Wednesday)
This week has been a little rough. I often hesitate to write about the small things that are happening in our family's world when I read people's blogs about serious problems. Life-threatening, gut-wrenching, down on your knees, flat on your face issues. I recognize that our needs are small.
Tomorrow I am heading over to have a "breast sono". I'm down with the lingo, let me tell ya. This hilarious lady that was scheduling my appointment said "Girl, you gotta call it the right thing! You're not having an ultrasound of your breast- you're having a 'breast sono'." So a breast sono I will have. After my last mammogram the doctor ordered an MRI because some abnormalities were seen. On the MRI 2 spots were found in my left breast close to my armpit. They're going to get a closer look tomorrow. I'm a bit worried about the appointment as they said it will last about an hour. I'm not sure I will be able to be still for an hour. I have a pinched nerve in my back that is causing pretty severe pain and crazy tingling and numbness in my right upper leg. It probably sounds like I am more worried about being in pain during the test than the actual test itself and/or the results of the test. I guess that's true. When I got the call telling me about the spots, or should I say abnormal findings on left breast at 2:00 position mid to posterior depth, I was pretty upset. And then I started thinking and praying. And I felt better. I see God's hand in my life in every way. Every day. And I trust Him. Thankfully, I feel very peaceful about this entire situation. I'm not saying that I have some pie-in-the-sky confidence that everything is fine. I just know that whatever happens, my life is in His hands.
My appointment is at 1:00 EST. If you think about it, please say a prayer for me.
Linda
Tomorrow I am heading over to have a "breast sono". I'm down with the lingo, let me tell ya. This hilarious lady that was scheduling my appointment said "Girl, you gotta call it the right thing! You're not having an ultrasound of your breast- you're having a 'breast sono'." So a breast sono I will have. After my last mammogram the doctor ordered an MRI because some abnormalities were seen. On the MRI 2 spots were found in my left breast close to my armpit. They're going to get a closer look tomorrow. I'm a bit worried about the appointment as they said it will last about an hour. I'm not sure I will be able to be still for an hour. I have a pinched nerve in my back that is causing pretty severe pain and crazy tingling and numbness in my right upper leg. It probably sounds like I am more worried about being in pain during the test than the actual test itself and/or the results of the test. I guess that's true. When I got the call telling me about the spots, or should I say abnormal findings on left breast at 2:00 position mid to posterior depth, I was pretty upset. And then I started thinking and praying. And I felt better. I see God's hand in my life in every way. Every day. And I trust Him. Thankfully, I feel very peaceful about this entire situation. I'm not saying that I have some pie-in-the-sky confidence that everything is fine. I just know that whatever happens, my life is in His hands.
My appointment is at 1:00 EST. If you think about it, please say a prayer for me.
Linda
Anybody have some time to spare?
I would like to wish for more time in a day. I feel like I have so much on my mind that I could blog (a.k.a "vent") for about 3 hours. But that will not be taking place tonight- sleep must be moved up on the priority list. Pictures will have to do. : ) As I was uploading these pictures it hit me- Where's my baby girl? Who is this big girl that took her place?
Coloring with "Sissie"
Sitting at the table with the family....
Helping mom with her "to-do" list and the bills........
Playing at Stella's party with Sophie
Seriously? You shut the gate? I was just about to go exploring!
Pretty girl
Have a fabulous day~
Linda
Silly pictures..... just because
Samantha and Lila were having a little playdate. It all started out peacefully...... each of them doing their own thing.
But then Lila wanted the book Samantha had.
And Samantha was nice enough to give it to her.
And Samantha was nice enough to give it to her.
It seemed as if every single time Samantha chose a new book Lila had her eye on it and Samantha knew it! Trouble is brewing............
Samantha has finally had enough and takes matters into her own hands. "Step back from the book, Lila, or I'm gonna have to smack ya"
Seriously, though (as if I have to explain) that's not what really happened.
By the end of the weekend they had worked it all out and were having tea together.
Lila- striking a pose- even in her sleep!
The camera was on the table- she pointed at it and said her version of "please". I said "Do you want me to take your picture?" She said "uh-huh!" And after I took the picture she wanted to look at it on the little screen.
The big kids being crazy
More pics from the birthday dinner
Lila and Daddy
Lila and Mommy
I asked Lila what she wanted to eat and she's answering "chicken" in sign language. Okay- so most people sign chicken under their arms. Lila chooses to do it behind her head! Wish I would have taken a video so you could hear her saying "bok bok" in a really high-pitched voice!
Hope you have a fabulous day~
Linda
Read at your own risk- the dangers of soy
I have had e-mails and facebook messages asking about the soy information so I thought this was the best way to share it. As I said in an earlier post, you can find evidence/information on the internet to support anything you want to believe. Here is a link to a website about the dangers of soy. LOTS of information- you can get lost in this website but towards the bottom is the information for kids. One of the most worrisome issues for kids with DS is how soy affects thyroid function. As kids with DS are prone to thyroid issues, and I've had hypothyroidism since the age of 17, it wasn't something I wanted to risk with Lila.
Here's the link. It may be a little "over the top" for you- if so, there are tons of other websites on the internet that discuss the negative side effects of soy.
westonaprice.org/soy
Hope you find the infomation useful!
Linda
Here's the link. It may be a little "over the top" for you- if so, there are tons of other websites on the internet that discuss the negative side effects of soy.
westonaprice.org/soy
Hope you find the infomation useful!
Linda
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