Lila has to sit up for 30 minutes after her meals (reflux). After she ate dinner I had to clean the kitchen so I moved her high chair into the living room and put her Elmo video on for her. She said, "No, mama. No melmo." I said "You don't want Elmo?" She said, "No, mama, baby." She started making the sign for baby and pointing to her watch (which is apparently on her shoulder) for "time." I said, "Oh, you want to watch Baby Signing Time?" And she said, "Yes, mama."
Oh man I'm excited.
Celebrating the small things~
Linda
My new favorite blogs? Couponing and money saving blogs. Thanks to Wendy I have been introduced to a lot of new sites that I never knew existed. There are plenty of opportunities to save out there, it just takes a little time and effort. I had gotten lazy about grocery shopping. It was all about convenience for me. With prices continuously going up in every single part of our budget, it was definitely time to make a change.
My first "coupon experience" was two weeks ago at Safeway. They were having an excellent sale on meat, I had a few coupons, and they had a few "combo deals" that I took advantage of. The total bill was $153 but after savings, coupons and combo deals I ended up paying $72 with a savings of $81. Not bad for my first time. When I was loading my groceries I was checking my receipt and saw that they had missed one of the combo deals. Cheated me out of $5! I debated on whether or not to go back in- it was raining, windy and I just didn't feel like it. Then I thought about how much $5 could buy and decided to go back in. I had my receipt and a copy of the weekly flier. I found the manager and asked him if I had misunderstood something in the flier. He looked at the flier, looked at my receipt, then looked at me like "Are you serious?" And I looked at him and said, "It's 5 bucks." And he said, "Yeah, you're right." And he gave me $5.
This week it's Triple Manufacturer's coupons at Harris Teeter. I got everything organized today and I'm headed there tomorrow. I've also been taking advantage of the weekly 40% off coupons from AC Moore and Michaels. They have so much more than crafts and decorations there. You can find toys that are great for OT, picture frames, gift ideas, make-your-own jewelry and more. (Don't tell anyone but the last 3 birthday parties we attended- I got the gifts 40% off at AC Moore.)
I have started buying many things in bulk at Costco. This takes a little planning but it beats running out and paying grocery store prices on laundry and cleaning supplies. It also takes time- especially when you buy meat that has to be separated and prepared for the freezer. (You have to watch your prices, though, sometimes they get you if you don't.)
I've really been having fun with this, as hokey as that sounds. It feels good to be making these changes, and every little bit helps.
Hugs~
Linda
My first "coupon experience" was two weeks ago at Safeway. They were having an excellent sale on meat, I had a few coupons, and they had a few "combo deals" that I took advantage of. The total bill was $153 but after savings, coupons and combo deals I ended up paying $72 with a savings of $81. Not bad for my first time. When I was loading my groceries I was checking my receipt and saw that they had missed one of the combo deals. Cheated me out of $5! I debated on whether or not to go back in- it was raining, windy and I just didn't feel like it. Then I thought about how much $5 could buy and decided to go back in. I had my receipt and a copy of the weekly flier. I found the manager and asked him if I had misunderstood something in the flier. He looked at the flier, looked at my receipt, then looked at me like "Are you serious?" And I looked at him and said, "It's 5 bucks." And he said, "Yeah, you're right." And he gave me $5.
This week it's Triple Manufacturer's coupons at Harris Teeter. I got everything organized today and I'm headed there tomorrow. I've also been taking advantage of the weekly 40% off coupons from AC Moore and Michaels. They have so much more than crafts and decorations there. You can find toys that are great for OT, picture frames, gift ideas, make-your-own jewelry and more. (Don't tell anyone but the last 3 birthday parties we attended- I got the gifts 40% off at AC Moore.)
I have started buying many things in bulk at Costco. This takes a little planning but it beats running out and paying grocery store prices on laundry and cleaning supplies. It also takes time- especially when you buy meat that has to be separated and prepared for the freezer. (You have to watch your prices, though, sometimes they get you if you don't.)
I've really been having fun with this, as hokey as that sounds. It feels good to be making these changes, and every little bit helps.
Hugs~
Linda
Birthday girl
This pretty girl? One of my very best friends. She's 23 years old today. It doesn't seem possible but it's true. She's off in Wyoming, working at the Heart Six Ranch, like she did last summer. We sure miss her around here. Happy birthday, sweet girl! Hope it's a great one.Love,
Mom
Update
A little update from our house. Lila had an x-ray the other day showing that her adenoids and tonsils are both over 80% enlarged. Looks like she'll be getting tonsils and adenoids out, tubes in. June 10th. The good news? No AAI! We are very relieved about this.
Lila had a good day today. I kept her home for a little while this morning to keep an eye on her, then took her to school a little late. She was so excited when I brought her into the classroom. She crawled right into the middle of the circle. It's such a wonderful feeling knowing that she loves school. We have been so blessed this year; she has such good teachers and therapists. I'm feeling a little melancholy as school is almost out. The last day of school is June 19th but since her procedure is on June 10th her last day of school will probably be June 9th. Maybe she'll be feeling well enough on the 19th to go in and say goodbye to everyone.
When I picked her up from school the teachers reported that she had a great day, she just didn't eat very much. We came home, she ate well, then we went to speech therapy. We had a good speech therapy session with good cooperation and a lot of words/sounds. : ) When we were leaving I saw her OT. She had a few minutes so I told her about Lila's meltdown yesterday. I asked her if she thought that Lila was over-stimulated with the combination of being in the rice/bean sensory bin and having physical therapy. In her opinion that's exactly what happened. She told me that she had just finished Lila's evaluation and hadn't even given her a score due to her severe sensory issues. We are doing brushing and joint approximation therapy at home- hopefully it will help. It seems we have a long road ahead.
When Nick got home we went over the entire OT evaluation- about 4 pages long- and learned all about Lila's sensory issues. And that's why we go to therapy. How in the world did she see all of that in 2 separate 1 hour sessions? I have absolutely no idea but she did. Some of Lila's issues we were aware of but most of them we were not. I think Nick was expecting me to have a little meltdown myself but I just said- "Well, at least we're getting her some help. One day at a time." And I meant that. For the most part. But it's still bugging me. How could we not have known some of this stuff? I don't know. We're not experts, that's for sure. How do you know, though, what you should just accept because your daughter has Down Syndrome? It's interesting, looking back at when Lila was a baby. It seems that, just like most kids with Down Syndrome, the big delays happen later. And that's probably a good thing. You have time to just love your baby and bond with them. Maybe you even try to convince yourself that your baby won't be as delayed as other kids with Down Syndrome. And for some kids that might be true. Looking around our support group, at the kids that are about Lila's age, I can only think of one kid that doesn't have a significant delay in at least one area. For most of the kids the delay is in speech. For Lila it's gross motor and sensory issues. She's doing pretty well in the speech department, but that's it. I'm not complaining, just observing. It's just life. And the fact of life is, kids with Down Syndrome are delayed. No matter how you try to twist and turn it, they are delayed. But even though I'm a little down today, a little disappointed, and maybe even a little scared, I know that Lila will be fine. Because we love her. And she's a determined little thing. And we're getting her the help she needs and deserves. And, like I told Nick, we'll take it one day at a time.
Hugs~
Linda
P.S. Last but definitely not least, my sister Brenda is in the hospital. She had a high fever today and her counts were dangerously low so they admitted her. She will probably be in for a few days. The good news- just heard from my mom- she's doing better tonight. Her fever has broken. Please say a prayer for her.
Lila had a good day today. I kept her home for a little while this morning to keep an eye on her, then took her to school a little late. She was so excited when I brought her into the classroom. She crawled right into the middle of the circle. It's such a wonderful feeling knowing that she loves school. We have been so blessed this year; she has such good teachers and therapists. I'm feeling a little melancholy as school is almost out. The last day of school is June 19th but since her procedure is on June 10th her last day of school will probably be June 9th. Maybe she'll be feeling well enough on the 19th to go in and say goodbye to everyone.
When I picked her up from school the teachers reported that she had a great day, she just didn't eat very much. We came home, she ate well, then we went to speech therapy. We had a good speech therapy session with good cooperation and a lot of words/sounds. : ) When we were leaving I saw her OT. She had a few minutes so I told her about Lila's meltdown yesterday. I asked her if she thought that Lila was over-stimulated with the combination of being in the rice/bean sensory bin and having physical therapy. In her opinion that's exactly what happened. She told me that she had just finished Lila's evaluation and hadn't even given her a score due to her severe sensory issues. We are doing brushing and joint approximation therapy at home- hopefully it will help. It seems we have a long road ahead.
When Nick got home we went over the entire OT evaluation- about 4 pages long- and learned all about Lila's sensory issues. And that's why we go to therapy. How in the world did she see all of that in 2 separate 1 hour sessions? I have absolutely no idea but she did. Some of Lila's issues we were aware of but most of them we were not. I think Nick was expecting me to have a little meltdown myself but I just said- "Well, at least we're getting her some help. One day at a time." And I meant that. For the most part. But it's still bugging me. How could we not have known some of this stuff? I don't know. We're not experts, that's for sure. How do you know, though, what you should just accept because your daughter has Down Syndrome? It's interesting, looking back at when Lila was a baby. It seems that, just like most kids with Down Syndrome, the big delays happen later. And that's probably a good thing. You have time to just love your baby and bond with them. Maybe you even try to convince yourself that your baby won't be as delayed as other kids with Down Syndrome. And for some kids that might be true. Looking around our support group, at the kids that are about Lila's age, I can only think of one kid that doesn't have a significant delay in at least one area. For most of the kids the delay is in speech. For Lila it's gross motor and sensory issues. She's doing pretty well in the speech department, but that's it. I'm not complaining, just observing. It's just life. And the fact of life is, kids with Down Syndrome are delayed. No matter how you try to twist and turn it, they are delayed. But even though I'm a little down today, a little disappointed, and maybe even a little scared, I know that Lila will be fine. Because we love her. And she's a determined little thing. And we're getting her the help she needs and deserves. And, like I told Nick, we'll take it one day at a time.
Hugs~
Linda
P.S. Last but definitely not least, my sister Brenda is in the hospital. She had a high fever today and her counts were dangerously low so they admitted her. She will probably be in for a few days. The good news- just heard from my mom- she's doing better tonight. Her fever has broken. Please say a prayer for her.
Our trip to the White House and Top Cops ceremony
On May 12th my husband and 6 other people from DEA were awarded a "Top Cop" award. Here's a small description of the case :
Case: The seven special agents are being honored for bringing a renowned terrorist to justice. This group of Special Agents planned a five year undercover operation to bring down Monzer Al Kassar, a man responsible for supplying the weapons that were used in the 1985 Achille Lauro high-jacking. The special agents infiltrated Kassar’s circle of associates by posing as representatives of the Colombian drug trafficking group, the Fuerzas Armadas Revolucionarias de Colombia (FARC). As FARC members, they pretended to seek modern-day weapons. The team recorded hours of these negotiations. Kassar was then tricked into believing he was meeting with a high level FARC commander and was arrested in Spain on U.S. charges. In addition, two of his associates were arrested in Romania where they had traveled to receive what they believed was payment for weapons. On November 20, 2008, the US jury convicted these terrorists on multiple terrorism charges.
It's the first time anyone from DEA has ever been awarded a "Top Cops" award. A few weeks before the awards ceremony Nick called me to tell me it was a possibility that we would all be invited to the White House before the awards. I thought that was an awesome idea but I had my doubts about it actually happening . A week later Nick called to get social security numbers for the members of our family attending the awards ceremony. Hmmmm..... maybe this really is going to happen! I still had my doubts but it was an exciting possibility. Long story short, it happened. (Obviously) At first we were told that Joe Biden would be meeting with the award recipients. Then word leaked out that President Obama had an hour blocked out on his calendar for a Rose Garden ceremony with the Top Cops. To start the day, the award recipients and their families met at a hotel on Dupont Circle and were bused over to the White House. The award recipients were checked in first so that their weapons could be stored for them. They were taken to the Roosevelt Room where they met with Joe Biden and President Obama. Tiffani, Justin, Nick's parents and I hung out in the East Garden with the other family members where we were served drinks and were entertained by a military jazz combo.
At this point we had no idea if we would be invited to the Rose Garden Ceremony but, as it turned out, we were. It was amazing. There were cameras and press everywhere. We still didn't know exactly who we were waiting for, Obama and Biden or just Biden. Seated behind us in the Rose Garden was the wife of one of the award recipients and two little kids, a girl and a boy. When the recipients came out and stood behind the Presidential podium, the little girl said (very loudly), "Are they going to sing?" It was so cute. All of a sudden Justin said, "It's both of them. It's Obama and Biden!" He's a foot taller than I am; I couldn't see. I thought he was messing with me. I didn't believe him. Then I saw them. I wish I could explain how I felt right then. I literally had goosebumps over my entire body. We were so close to them. It wouldn't have mattered if it would have been McCain and Palin, it was awesome. I was quickly brought back to reality when the little girl behind us said, in the same loud voice, "It's Barack-O!" So cute.......
My memory of the ceremony itself is mainly a blur. It was very inspiring, I remember that. I was a little distracted with the Secret Service and all the press. Awesome. It was awesome.
President Obama giving his speech
Look how serious my husband looks. : )
After the ceremony Joe Biden hung out with everyone for about 20 minutes. I actually got to shake his hand. He was so down to earth. He was taking pictures with people- anybody that asked him, he said yes. He was late to a meeting but he didn't care. (His detail kept reminding him that he was late but he still stayed with us.) He was so cute with the little kids, just like the grandpa he is.
After he left we were quickly escorted out of the Rose Garden. We were allowed to stay on the grounds of the White House for another 15 minutes to take pictures, then we were asked to leave.
Nick's parents in the East Garden
Nick & me
Tiffani & Justin
Walking away from the White House......
Some of the guys in front of the Warner Theatre sign
Hanging out waiting for the awards ceremony to start
The host, John Walsh
Pipe & Drum band- they were awesome!
The proud group- they were so happy!
Nick & me in front of the "Top Cops" screen
It was a fantastic day. The guys were so excited and we were so proud of them.
Hugs~
Linda
Case: The seven special agents are being honored for bringing a renowned terrorist to justice. This group of Special Agents planned a five year undercover operation to bring down Monzer Al Kassar, a man responsible for supplying the weapons that were used in the 1985 Achille Lauro high-jacking. The special agents infiltrated Kassar’s circle of associates by posing as representatives of the Colombian drug trafficking group, the Fuerzas Armadas Revolucionarias de Colombia (FARC). As FARC members, they pretended to seek modern-day weapons. The team recorded hours of these negotiations. Kassar was then tricked into believing he was meeting with a high level FARC commander and was arrested in Spain on U.S. charges. In addition, two of his associates were arrested in Romania where they had traveled to receive what they believed was payment for weapons. On November 20, 2008, the US jury convicted these terrorists on multiple terrorism charges.
It's the first time anyone from DEA has ever been awarded a "Top Cops" award. A few weeks before the awards ceremony Nick called me to tell me it was a possibility that we would all be invited to the White House before the awards. I thought that was an awesome idea but I had my doubts about it actually happening . A week later Nick called to get social security numbers for the members of our family attending the awards ceremony. Hmmmm..... maybe this really is going to happen! I still had my doubts but it was an exciting possibility. Long story short, it happened. (Obviously) At first we were told that Joe Biden would be meeting with the award recipients. Then word leaked out that President Obama had an hour blocked out on his calendar for a Rose Garden ceremony with the Top Cops. To start the day, the award recipients and their families met at a hotel on Dupont Circle and were bused over to the White House. The award recipients were checked in first so that their weapons could be stored for them. They were taken to the Roosevelt Room where they met with Joe Biden and President Obama. Tiffani, Justin, Nick's parents and I hung out in the East Garden with the other family members where we were served drinks and were entertained by a military jazz combo.
Of course everybody was taking pictures like crazy. Including us. : )
At this point we had no idea if we would be invited to the Rose Garden Ceremony but, as it turned out, we were. It was amazing. There were cameras and press everywhere. We still didn't know exactly who we were waiting for, Obama and Biden or just Biden. Seated behind us in the Rose Garden was the wife of one of the award recipients and two little kids, a girl and a boy. When the recipients came out and stood behind the Presidential podium, the little girl said (very loudly), "Are they going to sing?" It was so cute. All of a sudden Justin said, "It's both of them. It's Obama and Biden!" He's a foot taller than I am; I couldn't see. I thought he was messing with me. I didn't believe him. Then I saw them. I wish I could explain how I felt right then. I literally had goosebumps over my entire body. We were so close to them. It wouldn't have mattered if it would have been McCain and Palin, it was awesome. I was quickly brought back to reality when the little girl behind us said, in the same loud voice, "It's Barack-O!" So cute.......Sorry for the blurry picture but hey- it is proof!
My memory of the ceremony itself is mainly a blur. It was very inspiring, I remember that. I was a little distracted with the Secret Service and all the press. Awesome. It was awesome.Vice-President Joe Biden giving his speech
President Obama giving his speech
Look how serious my husband looks. : )
After the ceremony Joe Biden hung out with everyone for about 20 minutes. I actually got to shake his hand. He was so down to earth. He was taking pictures with people- anybody that asked him, he said yes. He was late to a meeting but he didn't care. (His detail kept reminding him that he was late but he still stayed with us.) He was so cute with the little kids, just like the grandpa he is.
After he left we were quickly escorted out of the Rose Garden. We were allowed to stay on the grounds of the White House for another 15 minutes to take pictures, then we were asked to leave.
Nick & me
Tiffani & Justin
Walking away from the White House......
Some of the guys in front of the Warner Theatre sign
Hanging out waiting for the awards ceremony to start
The host, John Walsh
Pipe & Drum band- they were awesome!
The proud group- they were so happy!
Nick & me in front of the "Top Cops" screen
It was a fantastic day. The guys were so excited and we were so proud of them.
Hugs~
Linda
Meltdown at PT
Lila had a meltdown at PT today. The day started out normally- except for the fact that she didn't want to eat breakfast. She is usually a really good eater. (She did this yesterday too. Didn't want to eat breakfast, ate a little better at lunch, by dinner she was super hungry. )
When I picked Lila up from school today the teacher told me that she had a great day. She was standing up and trying to play on her feet with the rest of the kids. (YAY) She had a scheduled speech session today and the therapist came back into the classroom and told the teacher about the long list of words that Lila said in speech. After school I brought Lila home, fed her a quick lunch-she refused everything but the grapes- and took her to PT. Everything was fine for the first few minutes but then she started yelling "No!" and grunting at Carla, the therapist. Carla put her in the tub of rice and beans, which she loves, but she still wasn't happy. Finally Carla found a shape sorter toy and Lila calmed down a little bit. Then she started getting frustrated with that toy, too. The last straw- she started biting on the plastic tub. Her back was to me so I couldn't really tell what was happening. She made a couple of noises and it sounded like she might be crying. Carla shot a questioning look in my direction but I couldn't tell what was going on. Carla told Lila, "I'm going to count to 3 and then pick you up." So she counted to 3 and gently started to lift Lila but Lila was still holding on to the plastic tub with her teeth and she wouldn't let go. I stepped in at that point and Lila finally let go but when we lifted her up it was obvious that she had been crying. 3 kleenex later, full of snot and tears, we headed out. Lila was clinging to my neck and shaking. At one point Carla said something like "Where were you, Lila? I don't know where you went but you weren't with us." I was very troubled by this whole thing and it was obvious Carla was too.
Maybe this doesn't sound like a big deal to anyone else. The thing is...... Lila doesn't really cry. Even when she has an ear infection. A double ear infection. She's one tough kid. Everyone in our family knows- if Lila's crying, there is something very wrong. She cries out, she yells, she grunts. She doesn't cry. It is very very rare to see tears.
I'm sure she's fine, maybe she is just worn out. Over-stimulated. We had a big day yesterday- we had a little Memorial Day get-together and she had 3 friends her age and one friend that's a little older to play with. They stayed until it was time for her to go to bed and she didn't want to go to sleep. A late night, up early for school, a busy day at school and then therapy. We'll see how she does tomorrow. Maybe I'll take her to the doctor just to make sure she doesn't have another ear infection.
Any thoughts?
Linda
When I picked Lila up from school today the teacher told me that she had a great day. She was standing up and trying to play on her feet with the rest of the kids. (YAY) She had a scheduled speech session today and the therapist came back into the classroom and told the teacher about the long list of words that Lila said in speech. After school I brought Lila home, fed her a quick lunch-she refused everything but the grapes- and took her to PT. Everything was fine for the first few minutes but then she started yelling "No!" and grunting at Carla, the therapist. Carla put her in the tub of rice and beans, which she loves, but she still wasn't happy. Finally Carla found a shape sorter toy and Lila calmed down a little bit. Then she started getting frustrated with that toy, too. The last straw- she started biting on the plastic tub. Her back was to me so I couldn't really tell what was happening. She made a couple of noises and it sounded like she might be crying. Carla shot a questioning look in my direction but I couldn't tell what was going on. Carla told Lila, "I'm going to count to 3 and then pick you up." So she counted to 3 and gently started to lift Lila but Lila was still holding on to the plastic tub with her teeth and she wouldn't let go. I stepped in at that point and Lila finally let go but when we lifted her up it was obvious that she had been crying. 3 kleenex later, full of snot and tears, we headed out. Lila was clinging to my neck and shaking. At one point Carla said something like "Where were you, Lila? I don't know where you went but you weren't with us." I was very troubled by this whole thing and it was obvious Carla was too.
Maybe this doesn't sound like a big deal to anyone else. The thing is...... Lila doesn't really cry. Even when she has an ear infection. A double ear infection. She's one tough kid. Everyone in our family knows- if Lila's crying, there is something very wrong. She cries out, she yells, she grunts. She doesn't cry. It is very very rare to see tears.
I'm sure she's fine, maybe she is just worn out. Over-stimulated. We had a big day yesterday- we had a little Memorial Day get-together and she had 3 friends her age and one friend that's a little older to play with. They stayed until it was time for her to go to bed and she didn't want to go to sleep. A late night, up early for school, a busy day at school and then therapy. We'll see how she does tomorrow. Maybe I'll take her to the doctor just to make sure she doesn't have another ear infection.
Any thoughts?
Linda
Thankful
Before I picked Lila up from school today I stopped by the grocery store. I picked up fresh fruit and deli meat for sandwiches. As I walked around the grocery store, noticing the ever-rising prices, I started to think about how I was going to walk to the check-out, pay for my groceries and not worry about a thing. Some people can't do that. My brother was laid off from his job this week. My husband was out of town this week and our dishwasher took a dump. Our basement ceiling is severely damaged and so is a lot of the carpet. A friend's husband was in a motorcycle accident this week. It's a miracle that he is alive as his helmet flew off. His recovery time will be lengthy. They have a typical 4 year old and a 2 year old with DS. Her husband can't use his arms at all- she has to help him with everything. My sister's having a rough time with chemo this week. My friend Bruce, who also has cancer, broke his hip and came down with pneumonia.
Next time I feel sorry for myself somebody please give me a reality check.
My daughter can't walk- she will in time.
My daughter aspirates and all of her liquids have to be thickened- she will outgrow this.
My daughter has sleep apnea and has to have her tonsils and adenoids out- thank God for modern medicine.
My daughter has sensory issues and we have lots of homework for this- so thankful for a great OT and for Medicaid that pays for it.
I could go on but you get the picture. We are blessed. I am thankful. I need to discipline myself to focus on the good things in my life.
Count your blessings today~
Linda
Next time I feel sorry for myself somebody please give me a reality check.
My daughter can't walk- she will in time.
My daughter aspirates and all of her liquids have to be thickened- she will outgrow this.
My daughter has sleep apnea and has to have her tonsils and adenoids out- thank God for modern medicine.
My daughter has sensory issues and we have lots of homework for this- so thankful for a great OT and for Medicaid that pays for it.
I could go on but you get the picture. We are blessed. I am thankful. I need to discipline myself to focus on the good things in my life.
Count your blessings today~
Linda
What a great day!
We had a great day today. Lila had OT at 9:00, a play date at 10:30 and another play date at 11:30 at the same park. Lila had so much fun! At the beginning of the day, she wasn't too sure about the slide. (She had never gone down by herself.) Here she is contemplating whether or not she wants to go down the slide. The "little kids" slide. Olivia is patiently waiting for her.
Finally she decided to let go and slide down.
Apparently Lila was ready to move on pretty quickly. This is the biggest slide in the park. As you can see, she didn't start out on the smallest slide, she started in the middle. She considered going down on her tummy.
After that picture I had to put my camera down. See the slide to the right? It's the biggest slide at the park. Big boys, approximately 4 to 5 years old, were scared to go down the biggest slide. But not my girl! She climbed right up there. I thought I was going to have a nervous breakdown. She climbed up to the biggest slide and let go. I was at the bottom, trying to convince her to go to one of the smaller slides. Yeah, right. I couldn't really move- I knew that when she came flying down that big slide it was essential that I was waiting to catch her at the bottom. The drop-off at the end was more than a foot. Little dare-devil. Wonder where she gets that from? Hee Hee
Here's my happy, filthy girl at the end of the day.
Into the bath she went.
No more Bethany. No more fancy schmancy pictures for us. We're back to good ole' snapshots on this blog. : )
Hugs~
Linda
Finally she decided to let go and slide down.
Apparently Lila was ready to move on pretty quickly. This is the biggest slide in the park. As you can see, she didn't start out on the smallest slide, she started in the middle. She considered going down on her tummy.
She reconsidered and decided to go down on her bottom.
(Not the best quality picture but I needed them to tell the story)
After that picture I had to put my camera down. See the slide to the right? It's the biggest slide at the park. Big boys, approximately 4 to 5 years old, were scared to go down the biggest slide. But not my girl! She climbed right up there. I thought I was going to have a nervous breakdown. She climbed up to the biggest slide and let go. I was at the bottom, trying to convince her to go to one of the smaller slides. Yeah, right. I couldn't really move- I knew that when she came flying down that big slide it was essential that I was waiting to catch her at the bottom. The drop-off at the end was more than a foot. Little dare-devil. Wonder where she gets that from? Hee Hee
Into the bath she went.
YAY! I love bath time!
No more Bethany. No more fancy schmancy pictures for us. We're back to good ole' snapshots on this blog. : )
Hugs~
Linda
Pondering
I've been thinking about the couple at the picnic. It wasn't the couple, really, as the man didn't say anything. So I guess I've been thinking about the lady that made the comment about Lila. I've also been reading the comments that people left on my post- thanks for the feedback-and trying to figure out what I think about it all. Beth- I also try to cut older people a little slack. (Even when I'm driving which is pretty tough for me. I look at them say "Okay, you're older, you get a pass".)
Now I wish that I would have said something. Hindsight, ya know? But if I could have found the grace to turn the stroller around, maybe it would have gone something like this:
"Excuse me- I heard what you said back there. About my daughter. That she's cute and that they don't all look like that. I don't know what you meant by that but I wanted you to know that what you said was upsetting to me. I'm sure you didn't mean anything negative by what you said but it still hurt."
Then again, wouldn't that just cause her to be defensive? Would that really accomplish anything? Just so I could get that off my chest? It just seems so negative. I would say it in a nice way, I would be respectful, but still..... the words themselves, no matter how they were said, might not have the desired effect.
I just don't know. How do we educate people without making it a tense situation. Is it worth it? Obviously it is, for the sake of my daughter, and all of the people in the world that are different. I want to do the right thing next time I am put in that situation, I'm just not sure what the right thing is. Of course, I could have gone on and on about how a person with Down Syndrome, just like any other person, shouldn't be defined by their looks. And I could have said that Lila is an amazing little girl. And she's the light of our lives. And she's changed our family for the better. And she's a miracle- she wasn't even supposed to live! And she surprises us every day by how well she's doing. And on and on and on. But how much time do you take? And how much will you get to say before the other person stops listening?
I don't have the answers. I wish I did. I'd love to have a quick comeback that is non-confrontational, effective and respectful. I think the delivery is as important as the message itself. Obviously if you are trying to think of a reply, something has been said that got under your skin a little. So what's most important- to let the person know that they upset you or to educate them? Is there a way to do both?
Still pondering~
Linda
Now I wish that I would have said something. Hindsight, ya know? But if I could have found the grace to turn the stroller around, maybe it would have gone something like this:
"Excuse me- I heard what you said back there. About my daughter. That she's cute and that they don't all look like that. I don't know what you meant by that but I wanted you to know that what you said was upsetting to me. I'm sure you didn't mean anything negative by what you said but it still hurt."
Then again, wouldn't that just cause her to be defensive? Would that really accomplish anything? Just so I could get that off my chest? It just seems so negative. I would say it in a nice way, I would be respectful, but still..... the words themselves, no matter how they were said, might not have the desired effect.
I just don't know. How do we educate people without making it a tense situation. Is it worth it? Obviously it is, for the sake of my daughter, and all of the people in the world that are different. I want to do the right thing next time I am put in that situation, I'm just not sure what the right thing is. Of course, I could have gone on and on about how a person with Down Syndrome, just like any other person, shouldn't be defined by their looks. And I could have said that Lila is an amazing little girl. And she's the light of our lives. And she's changed our family for the better. And she's a miracle- she wasn't even supposed to live! And she surprises us every day by how well she's doing. And on and on and on. But how much time do you take? And how much will you get to say before the other person stops listening?
I don't have the answers. I wish I did. I'd love to have a quick comeback that is non-confrontational, effective and respectful. I think the delivery is as important as the message itself. Obviously if you are trying to think of a reply, something has been said that got under your skin a little. So what's most important- to let the person know that they upset you or to educate them? Is there a way to do both?
Still pondering~
Linda
Check out these pics
I will post my pics from the White House tomorrow. I didn't have them in my possession over the weekend- they were on Justin's computer and he was out of town. The following pictures of Lila were taken by Bethany. She is so incredibly talented and patient. Lila didn't cooperate very well, crawling into their laundry room, finding the dog's food, opening a few of their cupboard doors, playing with the girls' toys and eating some of their Goldfish. Don't ask me how but Bethany got some great shots. Thanks, Bethany!
Blessed to be her mama~
Linda
Blessed to be her mama~
Linda
Sometimes people just don't think....
I will be blogging about our exciting trip to the White House soon- hopefully tonight or tomorrow- but right now I have something that I just have to get off my chest. We went to the local Down Syndrome spring picnic today. The skies were very cloudy but thankfully it didn't rain. Lila had a fantastic time! (And for my family- yes- I took a lot of pictures.) BUT.....
As we were leaving this couple was walking toward the pavilion. They didn't have any kids with them so they must have been meeting someone at the picnic. They looked over at Lila, riding happily in her stroller, and the woman said to the man, "See? She's cute. They don't all look like that."
Oh, man, that really didn't sit well with me. I kept walking but I could feel the heat travel from my feet all the way up to my face and I knew that my cheeks were flaming red. When I got to our car I asked Nick if he had heard what she said. He hadn't. I told him, then I watched the heat travel to his face. He looked at me and said, "I really wish you wouldn't tell me stuff like that." And got in the car.
But really. What possesses people to say things like that? Obviously they know someone that has Down Syndrome or they wouldn't have been there. Was she trying to give Lila some back-handed compliment? Doubt it. She didn't say it quietly but the comment wasn't for our benefit. I just don't get it.
Linda
As we were leaving this couple was walking toward the pavilion. They didn't have any kids with them so they must have been meeting someone at the picnic. They looked over at Lila, riding happily in her stroller, and the woman said to the man, "See? She's cute. They don't all look like that."
Oh, man, that really didn't sit well with me. I kept walking but I could feel the heat travel from my feet all the way up to my face and I knew that my cheeks were flaming red. When I got to our car I asked Nick if he had heard what she said. He hadn't. I told him, then I watched the heat travel to his face. He looked at me and said, "I really wish you wouldn't tell me stuff like that." And got in the car.
But really. What possesses people to say things like that? Obviously they know someone that has Down Syndrome or they wouldn't have been there. Was she trying to give Lila some back-handed compliment? Doubt it. She didn't say it quietly but the comment wasn't for our benefit. I just don't get it.
Linda
Two for Monday
Oops. Here I am blogging again when I'm supposed to be cleaning. : ) No worries, I'm almost finished.
Tiffani and I have a similar problem- we're both pretty hard on cell phones. Not intentionally, we just are. Both of our phones had some major issues. Nick felt that we should be able to get them replaced free of charge. Neither of us thought that we deserved that so he agreed to make the call to AT&T. (It would be hard for us to convince them of something we didn't believe ourselves.) As he was on the phone with the AT&T representative he was also online viewing our current charges. He said, "Why is our cell phone bill over $300?" I said, "It's not." He said "Yes it is, I'm looking at it right now. " OH. Apparently we had gone over our minutes and each minute over the plan was being billed at .45 a minute. To the beat of approximately $167. Did I say we had gone over the minutes? It would be nice to blame Tiffani and/or Justin but actually it was me. ME? I exclaimed in a shocked voice. I don't even like to talk on the phone. I mean I didn't think I did. Apparently I like to talk on the phone on those long rides back and forth to Lila's school. Luckily the AT&T rep told Nick that if we increased our minutes that day he would forgive the $167 and just charge us $20 for the increase in minutes to our plan. Great news! That just made my whole day!
Later that day Tiffani and Nick took a ride to an AT&T service center and got both of us refurbished phones for- you guessed it- free! How awesome is that?
Ok- I have to finish up- but I wanted to direct you to my new favorite blog. Hope you like it as much as I do.
jesswilson.wordpress.com
Have a great Monday~
Linda
Tiffani and I have a similar problem- we're both pretty hard on cell phones. Not intentionally, we just are. Both of our phones had some major issues. Nick felt that we should be able to get them replaced free of charge. Neither of us thought that we deserved that so he agreed to make the call to AT&T. (It would be hard for us to convince them of something we didn't believe ourselves.) As he was on the phone with the AT&T representative he was also online viewing our current charges. He said, "Why is our cell phone bill over $300?" I said, "It's not." He said "Yes it is, I'm looking at it right now. " OH. Apparently we had gone over our minutes and each minute over the plan was being billed at .45 a minute. To the beat of approximately $167. Did I say we had gone over the minutes? It would be nice to blame Tiffani and/or Justin but actually it was me. ME? I exclaimed in a shocked voice. I don't even like to talk on the phone. I mean I didn't think I did. Apparently I like to talk on the phone on those long rides back and forth to Lila's school. Luckily the AT&T rep told Nick that if we increased our minutes that day he would forgive the $167 and just charge us $20 for the increase in minutes to our plan. Great news! That just made my whole day!
Later that day Tiffani and Nick took a ride to an AT&T service center and got both of us refurbished phones for- you guessed it- free! How awesome is that?
Ok- I have to finish up- but I wanted to direct you to my new favorite blog. Hope you like it as much as I do.
jesswilson.wordpress.com
Have a great Monday~
Linda
Reality Monday
I took it easy yesterday and I'll be making up for it today. This house looks like a tornado went through it! My in-laws will be here in about 7 hours so I should get to work. : )
I got a message from an acquaintance this morning. Her daughter has DS and is about a year younger than Lila. She started walking over the weekend. YAY! Good for them. I'm happy for them. Really. I'm just SOOOOOO ready for Lila to walk. She'll be 3 in September. I know that people don't mean any harm when they get that confused look on their face after I tell them that Lila is 2 1/2 and not walking yet. The next thing that usually comes out of their mouth is to ask if we have taken her to physical therapy. Sometimes I am so tempted to say "NO! Do you think we should?"
It will happen. When she's ready. I hope it's soon!
Hugs~
Linda
I got a message from an acquaintance this morning. Her daughter has DS and is about a year younger than Lila. She started walking over the weekend. YAY! Good for them. I'm happy for them. Really. I'm just SOOOOOO ready for Lila to walk. She'll be 3 in September. I know that people don't mean any harm when they get that confused look on their face after I tell them that Lila is 2 1/2 and not walking yet. The next thing that usually comes out of their mouth is to ask if we have taken her to physical therapy. Sometimes I am so tempted to say "NO! Do you think we should?"
It will happen. When she's ready. I hope it's soon!
Hugs~
Linda
Life has it's ups and downs. Today was definitely an "up"
What a fantastic day. This morning when I came downstairs I was greeted with my favorite flowers, cards and a gift card to Nordstrom from my big kids. Then it was church with the whole family in the morning, lunch with friends at one of my favorite restaurants to celebrate Mother's Day. I took a long nap, then had dinner with the family at another one of my favorite restaurants to celebrate Tiffani's birthday. Her actual birthday is on May 28th but she leaves on Wednesday for the ranch in Wyoming so we celebrated a little early. Possibly the best part of the day? Nick and Tif taught Lila to say "Happy Mothers Day" to me. AWESOME!
I am so excited for Tuesday. Nick and some of his fellow law enforcement friends have been selected to receive an award at the annual "Top Cops" ceremony. Nick's parents are coming down from New York and we will be attending the ceremony, without Lila. Justin's girlfriend, Maggie, is coming over to watch her. Okay- so I'm a little nervous about this- not because of Maggie but because we have never, EVER left Lila for this long. (Did I mention ever?) We are leaving at 11:00 a.m. and won't be back home for about 12 hours. I have waited to post this until right now because we have kept part of this a secret from Nick's parents. (Since they are leaving in the morning I seriously doubt they will be checking my blog tonight. Hee Hee ) We are all (because we will be tagging along with the award recipients) going to the White House on Tuesday. Yes, we will be meeting President Obama and Vice President Joe Biden. (Have I told you that I am so excited for Tuesday?) It's going to be a LLLOOONNNGGG day but it will be well worth it. The actual Top Cops ceremony is at 7:30 p.m. at a theater in D.C. on Tuesday night. I am so proud of my husband and the group that he has been nominated with. After the ceremony is over I'll probably blog a bit more about the award but because I have an extremely cautious and suspicious husband I have agreed not to write anything on the "world wide web" until after it's over.
So that's all for now! I'll leave you with this picture of my two beautiful girls at the end of this lovely day.
Hope you all had a great day.
Hugs~
Linda
I am so excited for Tuesday. Nick and some of his fellow law enforcement friends have been selected to receive an award at the annual "Top Cops" ceremony. Nick's parents are coming down from New York and we will be attending the ceremony, without Lila. Justin's girlfriend, Maggie, is coming over to watch her. Okay- so I'm a little nervous about this- not because of Maggie but because we have never, EVER left Lila for this long. (Did I mention ever?) We are leaving at 11:00 a.m. and won't be back home for about 12 hours. I have waited to post this until right now because we have kept part of this a secret from Nick's parents. (Since they are leaving in the morning I seriously doubt they will be checking my blog tonight. Hee Hee ) We are all (because we will be tagging along with the award recipients) going to the White House on Tuesday. Yes, we will be meeting President Obama and Vice President Joe Biden. (Have I told you that I am so excited for Tuesday?) It's going to be a LLLOOONNNGGG day but it will be well worth it. The actual Top Cops ceremony is at 7:30 p.m. at a theater in D.C. on Tuesday night. I am so proud of my husband and the group that he has been nominated with. After the ceremony is over I'll probably blog a bit more about the award but because I have an extremely cautious and suspicious husband I have agreed not to write anything on the "world wide web" until after it's over.
So that's all for now! I'll leave you with this picture of my two beautiful girls at the end of this lovely day.
Hope you all had a great day.
Hugs~
Linda
Happy Mothers Day
This poem was written by an amazing mother, Jess Wilson, that I found on this blog.
Because you are strong
Even when you’re not
Because you are always there
Especially when you can’t be
Because when people say, ‘How do you do it?’ you wonder, ‘How would I not?’
Because you can make everything better with a band-aid and a kiss
And because it nearly destroys you when you can’t
Because you laugh at knock-knock jokes that make no sense
Because you cry at the drop of a hat
Because you are terrified to let them go
And because you do
Because you haven’t eaten a hot meal in years
And because you’ve barely noticed
Because you know all the words to ‘hush little baby’
Or because you make them up
Because you’ve read the same bedtime story so many times
That you could do it in your sleep
And because sometimes you do
Because your kiss to a hot forehead is no less accurate than a thermometer
Because you know the power of ice cream
And the power of withholding it
Because you have eyes in the back of your head
Or at least they think you do
Because you know there is no finer art than what’s on your fridge
Because there is no limit to your love
But there are limits and rules and expectations in your home
Because in your eyes, every human being is another mother’s child
Because there is literally nothing you wouldn’t do to protect your babies
Because your babies may be 35, but they’re still your babies
Because they make you the best version of yourself
Especially when you feel like the worst
Because the phrase ‘full time mom’ strikes you as absurd
Because you can’t imagine what it would mean to be a ’part-time mom’
Because you are patient
Even when you’re not
Because you could watch your child sleep for hours
Because you see miracles in the smallest victories
And opportunities in every defeat
Because you would take all their pain if you could
And because you don’t
Because you can’t imagine life without them
Because you know and do and are so much more than you give yourself credit for
Because today is your day
Happy Mother’s Day
Hugs to all of you~
LindaBefore I was a Mom.......
or forgot words to a lullaby.
I didn't worry whether or not
my plants were poisonous.
I never thought about immunizations.
Before I was a Mom,
I had never been puked on.
Pooped on.
Chewed on.
Peed on.
I had complete control of my mind
and my thoughts.
I slept all night.
Before I was a Mom,
I never held down a screaming child
so doctors could do tests.
Or give shots.
I never looked into teary eyes and cried.
I never got gloriously happy over a simple grin.
I never sat up late hours at night
watching a baby sleep.
Before I was a Mom,
I never held a sleeping baby just because
I didn't want to put her down.
I never felt my heart break into a million
pieces
when I couldn't stop the hurt.
I never knew that something so small
could affect my life so much.
I never knew that I could love someone so much.
I never knew I would love being a Mom.
Before I was a Mom,
I didn't know the feeling of
having my heart outside my body..
I didn't know how special it could feel
to feed a hungry baby.
I didn't know that bond
between a mother and her child.
I didn't know that something so small
could make me feel so important and happy.
Before I was a Mom,
I had never gotten up in the middle of the night
every 10 minutes to make sure all was okay.
I had never known the warmth,
the joy,
the love,
the heartache,
the wonderment
or the satisfaction of being a Mom...
I didn't know I was capable of feeling so much,
before I was a Mom ....
Happy Mothers Day~
Linda
Linda
It's Friday and the sun is out
Read at your own risk- I just read this post and some of the sentences are so long and poorly put together it's frightening. : )
Hurray for sunshine. I really wonder if I do have some degree of seasonal affective disorder. We've had- what is it- 5 or 6 straight days of rain. YUCK. I start feeling a little cranky after 2 days. Apparently I need sunshine. Yesterday I sent Tif a text that read "I have given myself a serious attitude adjustment. It is safe to come home. Sorry." True story. And then my sweet girl sent me one back that said "It's okay. We all have our moments. At least you didn't let it ruin your whole day!"
Yesterday Lila had her first private OT appointment at the therapy center. (Thank you, Medicaid) It's nice to have all 3 of her therapies at the same place, so we're familiar with Kelly, the OT. She's even given me advice before when one of the other therapists told her that Lila was having some sensory issues. She comes highly recommended and we are so happy that she made room for Lila in her busy schedule. Back to the appointment. When Kelly was working with Lila it became apparent to me that Lila's sensory issues are worse than I thought. After about 45 minutes Kelly said to me "We have a lot of work to do. I'll finish the assessment at the next appointment and then we'll talk about how often she should be seen for OT." I felt hot tears spring to my eyes. I knew that's what she was going to say- it was obvious to me and I don't know the first thing about OT. I said "I feel so bad. We've wanted to bring her in for OT- it's just that our insurance rolls PT and OT into one category and since she isn't walking yet we felt as if we should focus on PT and we can't afford to pay for it out-of-pocket." She immediately came over to me and said "Linda, this is going to be okay." I felt so stupid because I knew she had seen the tears in my eyes but at that moment I was so overwhelmed with guilt that we hadn't been doing enough for Lila. Ridiculous, really, but it's still how I felt at the moment. I know some of that pressure comes from within me because Lila's the only small child I have so it's the least I can do to make sure we're doing everything we can for her. But Kelly was very reassuring and Lila showed off her fine motor skills like a champion so it wasn't all bad. : )
This week our ENT appointment went so well. I had been very concerned because at some of our previous appointments he has acted as if it were no big deal that Lila was having so many ear infections. He wanted to take the "wait and see" approach. After the last visit with the NP, where she didn't see fluid but after the flat tympanogram she conceded that there was probably fluid in her ears, Lila was diagnosed with a double ear infection by our pediatrician. The pediatrician saw fluid and said that he couldn't be sure that it was a full-blown infection but neither of the eardrums looked normal. You can pretty much tell by Lila's actions when she has an ear infection and I think she did. This has become a very long story, hasn't it? So I began asking people for advice, asking for other recommended ENT's in the area, and by the time her appointment rolled around I had 3 back-up appointments just in case. But..... apparently our regular ENT had a change of heart? Change of opinion? An epiphany? I'm not sure what it was but he was a different person than we had previously seen. Obviously not an entirely different person but he was so pro-active! Let's schedule the appointment for tubes. She'll need the micro-tubes, they don't last as long, but we need to get a handle on these ear infections. This is a crucial time for her with speech and development. Really? That's what I've been saying! YAY! Then after reviewing our home sleep study he said that she definitely needs her adenoids removed and possibly her tonsils. He didn't even make us take her in for a supervised sleep study at the hospital. (I had actually gotten a prescription from our pediatrician for a sleep study just in case he wanted to take the "wait and see" approach in this area too but it turns out we won't be needing it.) He said that are tonsils are big but not huge. He is being conservative in this area but he convinced us that he's on the right track with this. She's going to have an x-ray which will help in his decision and will also show us if she has atlantoaxial instability, AAI. He said he might not make the decision on the tonsils until he's actually doing the procedure for the tubes and adenoids because the anesthetic will put Lila into a very deep sleep (obviously) and he'll be able to see how much the size of her tonsils are affecting her breathing. He said he doesn't want to take the tonsils out if it's not necessary but doesn't want to end up having to take them 2 years down the road either. Obviously the risk of complications and length of recovery time change drastically if he takes the tonsils too. Her surgery is scheduled for June 10th. She will miss the last week of school but maybe she'll feel well enough to go in on the last day to say goodbye to her teachers. I hate for her to miss the last week of school but if we didn't grab the last spot on that date we'd have to wait until the end of July for her surgery. We opted to have her miss school.
I'm going out to enjoy some sunshine. If I don't have time to post again this weekend, I hope you all have a Happy Mother's Day! I am so thankful to have this online community of support and love from other mothers traveling along the same path.
Hugs~
Linda
Hurray for sunshine. I really wonder if I do have some degree of seasonal affective disorder. We've had- what is it- 5 or 6 straight days of rain. YUCK. I start feeling a little cranky after 2 days. Apparently I need sunshine. Yesterday I sent Tif a text that read "I have given myself a serious attitude adjustment. It is safe to come home. Sorry." True story. And then my sweet girl sent me one back that said "It's okay. We all have our moments. At least you didn't let it ruin your whole day!"
Yesterday Lila had her first private OT appointment at the therapy center. (Thank you, Medicaid) It's nice to have all 3 of her therapies at the same place, so we're familiar with Kelly, the OT. She's even given me advice before when one of the other therapists told her that Lila was having some sensory issues. She comes highly recommended and we are so happy that she made room for Lila in her busy schedule. Back to the appointment. When Kelly was working with Lila it became apparent to me that Lila's sensory issues are worse than I thought. After about 45 minutes Kelly said to me "We have a lot of work to do. I'll finish the assessment at the next appointment and then we'll talk about how often she should be seen for OT." I felt hot tears spring to my eyes. I knew that's what she was going to say- it was obvious to me and I don't know the first thing about OT. I said "I feel so bad. We've wanted to bring her in for OT- it's just that our insurance rolls PT and OT into one category and since she isn't walking yet we felt as if we should focus on PT and we can't afford to pay for it out-of-pocket." She immediately came over to me and said "Linda, this is going to be okay." I felt so stupid because I knew she had seen the tears in my eyes but at that moment I was so overwhelmed with guilt that we hadn't been doing enough for Lila. Ridiculous, really, but it's still how I felt at the moment. I know some of that pressure comes from within me because Lila's the only small child I have so it's the least I can do to make sure we're doing everything we can for her. But Kelly was very reassuring and Lila showed off her fine motor skills like a champion so it wasn't all bad. : )
This week our ENT appointment went so well. I had been very concerned because at some of our previous appointments he has acted as if it were no big deal that Lila was having so many ear infections. He wanted to take the "wait and see" approach. After the last visit with the NP, where she didn't see fluid but after the flat tympanogram she conceded that there was probably fluid in her ears, Lila was diagnosed with a double ear infection by our pediatrician. The pediatrician saw fluid and said that he couldn't be sure that it was a full-blown infection but neither of the eardrums looked normal. You can pretty much tell by Lila's actions when she has an ear infection and I think she did. This has become a very long story, hasn't it? So I began asking people for advice, asking for other recommended ENT's in the area, and by the time her appointment rolled around I had 3 back-up appointments just in case. But..... apparently our regular ENT had a change of heart? Change of opinion? An epiphany? I'm not sure what it was but he was a different person than we had previously seen. Obviously not an entirely different person but he was so pro-active! Let's schedule the appointment for tubes. She'll need the micro-tubes, they don't last as long, but we need to get a handle on these ear infections. This is a crucial time for her with speech and development. Really? That's what I've been saying! YAY! Then after reviewing our home sleep study he said that she definitely needs her adenoids removed and possibly her tonsils. He didn't even make us take her in for a supervised sleep study at the hospital. (I had actually gotten a prescription from our pediatrician for a sleep study just in case he wanted to take the "wait and see" approach in this area too but it turns out we won't be needing it.) He said that are tonsils are big but not huge. He is being conservative in this area but he convinced us that he's on the right track with this. She's going to have an x-ray which will help in his decision and will also show us if she has atlantoaxial instability, AAI. He said he might not make the decision on the tonsils until he's actually doing the procedure for the tubes and adenoids because the anesthetic will put Lila into a very deep sleep (obviously) and he'll be able to see how much the size of her tonsils are affecting her breathing. He said he doesn't want to take the tonsils out if it's not necessary but doesn't want to end up having to take them 2 years down the road either. Obviously the risk of complications and length of recovery time change drastically if he takes the tonsils too. Her surgery is scheduled for June 10th. She will miss the last week of school but maybe she'll feel well enough to go in on the last day to say goodbye to her teachers. I hate for her to miss the last week of school but if we didn't grab the last spot on that date we'd have to wait until the end of July for her surgery. We opted to have her miss school.
I'm going out to enjoy some sunshine. If I don't have time to post again this weekend, I hope you all have a Happy Mother's Day! I am so thankful to have this online community of support and love from other mothers traveling along the same path.
Hugs~
Linda
The ever-changing life
For one week these two precious (crazy) kids will be home at the same time. Justin is coming home today from Eastern University in Pennsylvania. In one week Tiffani will fly out to Jackson Hole, Wyoming to work at the Heart Six Ranch, just like she did last summer. Life is ever-changing. As the kids grow up and go on with their lives, our moments together seem to be few and far-between. That's why I intend to cherish the next 7 days.
Proud to be their mama~
Linda
Doctor's appointments
We had a busy day yesterday. Lila had school in the morning, then she had an ENT appointment, then a hematology appointment. She was such a trooper! She sat still for the ENT when he was looking in her ears, then fought him when he wanted her to stick out her tongue so he could check out her tonsils. I told her to stick out her tongue and say "Ah", and she said no. Then later in the appointment when he was reviewing our home sleep study, she stuck out her tongue and said "Ah" about 5 times. He was laughing at her. ( I will post tomorrow about the ENT appointment. Would love to have some feedback/advice on what we are about to do.)
Her hematology appointment was scheduled about 45 minutes after the end of the ENT appointment- which was fabulous because I got lost twice between the two offices They are approximately 2 miles from one another. AAAAGGGHHHH! The good news is we arrived right on time. : ) We talked to the doctor first and Lila was a champion. This time when the doctor asked she stuck out her tongue and said "Ah". I was dreading this appointment. Taking her blood isn't easy. She was in the NICU for 7 weeks, which isn't long, but long enough to "use her veins up". Or that's what the people trying to get her blood always say. So when the girl walked in alone I was about to tell her that we were probably going to need some help but before I could get the words out she said these magical words. "I think we're going to be able to do this with a finger prick." YES! That's what I'm talking about! It worked. Lila didn't like it much but it was about 95% easier than our previous appointments. We waited for the results and were pleased with them. One of my concerns was that Lila doesn't take a vitamin with iron. We have finally gotten her constipation under control with diet alone. She hasn't been on Miralax for over 6 months. I was concerned that they were going to tell us that her iron was low and then we would have to put her on vitamins with iron. This would probably mean that we would be forced to start the Miralax again. Very controversial subject but we aren't in favor of the long-term use of Miralax. ANYWAY! It's not relevant at this time because her bloodwork looks great. The only result we are waiting on is her T4.
Last but not least, I never posted Lila's stats from the geneticist appointment. First of all, I love what she says at the beginning of the paragraph. "Lila is a very pretty, interactive child." Okay, okay, she probably writes that on all of the clinic reports. On with the info- She weighs 22 pounds 8 ounces which is about 25th percentile on the DS chart. She's 85 centimeters, 75th percentile on the DS chart. Her head is in the 50th percentile on the DS chart. In the geneticist's final assessment she writes "Lila Nargi is a delightful 2 1/2 year old young lady with Down Syndrome." I wholeheartedly agree.
Signing off to catch up on some much-needed sleep~
Linda
Her hematology appointment was scheduled about 45 minutes after the end of the ENT appointment- which was fabulous because I got lost twice between the two offices They are approximately 2 miles from one another. AAAAGGGHHHH! The good news is we arrived right on time. : ) We talked to the doctor first and Lila was a champion. This time when the doctor asked she stuck out her tongue and said "Ah". I was dreading this appointment. Taking her blood isn't easy. She was in the NICU for 7 weeks, which isn't long, but long enough to "use her veins up". Or that's what the people trying to get her blood always say. So when the girl walked in alone I was about to tell her that we were probably going to need some help but before I could get the words out she said these magical words. "I think we're going to be able to do this with a finger prick." YES! That's what I'm talking about! It worked. Lila didn't like it much but it was about 95% easier than our previous appointments. We waited for the results and were pleased with them. One of my concerns was that Lila doesn't take a vitamin with iron. We have finally gotten her constipation under control with diet alone. She hasn't been on Miralax for over 6 months. I was concerned that they were going to tell us that her iron was low and then we would have to put her on vitamins with iron. This would probably mean that we would be forced to start the Miralax again. Very controversial subject but we aren't in favor of the long-term use of Miralax. ANYWAY! It's not relevant at this time because her bloodwork looks great. The only result we are waiting on is her T4.
Last but not least, I never posted Lila's stats from the geneticist appointment. First of all, I love what she says at the beginning of the paragraph. "Lila is a very pretty, interactive child." Okay, okay, she probably writes that on all of the clinic reports. On with the info- She weighs 22 pounds 8 ounces which is about 25th percentile on the DS chart. She's 85 centimeters, 75th percentile on the DS chart. Her head is in the 50th percentile on the DS chart. In the geneticist's final assessment she writes "Lila Nargi is a delightful 2 1/2 year old young lady with Down Syndrome." I wholeheartedly agree.
Signing off to catch up on some much-needed sleep~
Linda
Monday Morning Ramblings
Webster's definition of feisty:
Tenacious, energetic, spunky; Belligerent; prepared to stand and fight, especially in spite of relatively small stature or some other disadvantage
My definition of feisty:
She looks so innocent, right? Well, looks can be deceiving. This kid is so feisty. I love when people say "Oh, kids with Down Syndrome are so loving and happy. So much easier than typical kids." Really? Loving and happy, yes. Easy? Come on over to my house, honey, I'll show you easy.
Last week Lila was eating lunch. She wanted her juice but wouldn't say please. Here is the short version of the story.
Me: Do you want your juice?
Lila: Yes
Me: Well, say please.
Lila: Silence
Me: Lila- say please and I'll give you your juice.
Lila: Silence
Me: Come on, Lila, say please and I'll give it to you.
Lila: NO!
Me: That's fine- I'll wait until you can say please.
She starts playing with her fingers, toes, shirt, cheeks, you name it she's playing with it. She won't look at me. So after about 3 minutes I got up and walked out of the kitchen leaving her in her high chair. Finally she said please.
Yesterday we were eating dinner and she was sitting by her dad. She kept sticking food behind her in her high chair and throwing it on the floor. After some conversation about how we don't throw food, etc, he was trying to get her to acknowledge what he said to her. We don't throw food, Lila. Okay? Say "yes, daddy". Pretty much the same thing happened- she wouldn't do it, wouldn't do it, wouldn't do it. Finally she said "uh-huh". As soon as he looked away from her she said "huh-uh".
I could go on and on with examples. The kid has spunk. And thank God that she does. She needed it when I was pregnant with her and the doctors kept telling us that she probably wouldn't make it. She proved them wrong with her feisty self. I try to remind myself that it's a good thing she has so much spunk and determination. Sometimes it drives me crazy, though.
Hug your feisty kids today~
Linda
Tenacious, energetic, spunky; Belligerent; prepared to stand and fight, especially in spite of relatively small stature or some other disadvantage
My definition of feisty:
She looks so innocent, right? Well, looks can be deceiving. This kid is so feisty. I love when people say "Oh, kids with Down Syndrome are so loving and happy. So much easier than typical kids." Really? Loving and happy, yes. Easy? Come on over to my house, honey, I'll show you easy.
Last week Lila was eating lunch. She wanted her juice but wouldn't say please. Here is the short version of the story.
Me: Do you want your juice?
Lila: Yes
Me: Well, say please.
Lila: Silence
Me: Lila- say please and I'll give you your juice.
Lila: Silence
Me: Come on, Lila, say please and I'll give it to you.
Lila: NO!
Me: That's fine- I'll wait until you can say please.
She starts playing with her fingers, toes, shirt, cheeks, you name it she's playing with it. She won't look at me. So after about 3 minutes I got up and walked out of the kitchen leaving her in her high chair. Finally she said please.
Yesterday we were eating dinner and she was sitting by her dad. She kept sticking food behind her in her high chair and throwing it on the floor. After some conversation about how we don't throw food, etc, he was trying to get her to acknowledge what he said to her. We don't throw food, Lila. Okay? Say "yes, daddy". Pretty much the same thing happened- she wouldn't do it, wouldn't do it, wouldn't do it. Finally she said "uh-huh". As soon as he looked away from her she said "huh-uh".
I could go on and on with examples. The kid has spunk. And thank God that she does. She needed it when I was pregnant with her and the doctors kept telling us that she probably wouldn't make it. She proved them wrong with her feisty self. I try to remind myself that it's a good thing she has so much spunk and determination. Sometimes it drives me crazy, though.
Hug your feisty kids today~
Linda
Subscribe to:
Posts (Atom)