Monday, May 28, 2012
Therapy Decisions
With Lia ending her 3 years in the Help Me Grow program, her therapy has stopped. The school system is supposed to pick up her therapies, but that has been a fiasco. We finally got her evaluation on Friday, still no appointment for the meeting to set up her IEP. All of this should have been done before Lia turned 3, on May 7th. Essentially what this means is that Lia is without therapy until the school year starts in Sept. It wouldn't be too bad, except that when she went to the CP clinic at Nationwide Children's last week they noticed that Lia has lost range of motion and has increased muscle tightness since her appointment 2 months ago. sigh. They revisited the idea of Constraint Therapy to us. It is a very intensive program, but after reading about it and seeing Lia moving backward in muscle tone and movement, we are considering it seriously for the first time. They first mentioned this therapy to us when Lia was only 2 months old, so it has been 3 years :) We're praying about it. It would be very expensive and time consuming. Daily therapy and casting of Lia's arm down at Nationwide for at least a month. With 8 children that is a lot of time! It would never work during the school year, since Justin is in school, Alyssa has classes at the local high school and MCS, and Levi has preschool 3 afternoons a week, plus me homeschooling the 3 middle children. Add in that Luke is still nursing 4 times a day, and I see a perfect storm of reasons why this won't work. But, it is a 3 month window of opportunity that we only get once a year. I'll be setting up the appointment to talk to the PT/OT in charge of the CIT program tomorrow. While Mick and I are in Colorado next week, I am using the time for prayer and planning for the next school year. This mama is in need of a break :) Luke of course will be with us, but compared to my normal routine and days these will definitely be vacation days for me :)
Tuesday, May 22, 2012
Lia's 10 year plan has many bumps, and year 3 is only starting!
It's been awhile since I've had time to update, but things have been SO busy! This week signals the wrap up of a lot of activities and school classes. I actually have one day on the calendar this week without anything on it! Today, was not that day however.
Lia has been wearing a new brace on her left leg to help with her toe walking and muscle tone issues. The brace is making her walking pigeon toed even more pronounced, so we were glad to get to our 2 month follow up with the ortho at the cerebral palsy clinic at Nationwide Children's. Lia started her day by riding Princess, her last riding therapy class of the spring session. She has loved her weekly class, and hopefully we can pick them back up in the fall. My point, Lia had already had one therapy session today before we got to the CP clinic. Thankfully, the hour drive gave Lia the perfect opportunity for a nap before she had to start therapy session #2. Unfortunately, Lia did not wake up in the mood to deal with people poking and prodding her, let alone play the reindeer games that the doctors and therapist wanted her to. Reasoning with a 3 yr old does not go well, especially when said toddler is overly tired! Thankfully we did get her to walk with the brace on and off for them so they could evaluate her walk and gait. What they had to say was not the good news we were hoping for.
The double edged sword of Lia's brace is that while it is helping her to walk flat footed, it makes her hip rotate in even more than before. And, until she is older and can do the right exercises to strengthen her muscles in her hip, it is not going to get any better and quite probably get worse. Then the doctor told me that Lia had a growth spurt in the last 2 months and while her bones had grown, the muscles in her left side were not able to keep pace and had tightened some. Her left arm can't extend fully right now, so it is back to stretching exercises 3-4 times a day for a few months. We are so blessed to have such great care for Lia! Having a child with special needs is exhausting physically, mentally, and emotionally, but with God's strength we take it day by day and feel so blessed for this beautiful sweet little girl He has blessed us with. Some days are harder than others.
This week I had to face a child seeing Lia as "different." Judging her on her awkward gate an brace, not for the treasure that she is. While Lia and Addy were playing during Justin's soccer game, a little girl came over and stared at Lia playing. Yes, my sweet girl walks with a limp and wears a brace, but she is just like every other 3 year old. This child asked Addy why Lia had that thing on her leg. Taking it all in stride, as though it is totally normal for kids to wear braces and feeling the need to educate this girl, Addy told her about Lia's lefty leg, that she had died twice the day she was born, and that because of that she had to go to therapy and wear her lefty brace. And, she told her that Lia is still great at doing everything (ok this mama's heart was so proud by this point!) Then Addy asked her to join them. The girl did, and she played nicely with Lia, but it opened my eyes to the fact that Lia is growing up, and her differences are going to become more obvious. It breaks my heart because I know people can be mean, and kids can be worse.
So, when the ortho told me that Lia's gait was going to get worse before it got better, and that we had lost range of motion today, it was confirmation to me that there were going to be many more days when Lia was going to be stared at, laughed at, and left out because of her disability. I know the ortho and the PT/OTs all think that by 10 Lia could be walking normally and using her left hand much better, but at barely 3 that 10 year mark is feeling pretty far off. Before I get you thinking I have a huge pity party going, let me assure you I don't. Lia is a miracle. God has a plan for her, and she is perfectly and wonderfully created to fulfill the purpose that God has for her. I don't doubt that for a moment! Yes, right now is hard, but she has a family who loves her and a God who is bigger than any obstacle or hurt feelings she may face. So we'll chalk this doctor's appointment up to a small setback, but tomorrow is a new day. We'll give each day to Jesus, and let him work it out to be exactly what it is meant to be. In that, my friends, is where our hope comes from.
Lia has been wearing a new brace on her left leg to help with her toe walking and muscle tone issues. The brace is making her walking pigeon toed even more pronounced, so we were glad to get to our 2 month follow up with the ortho at the cerebral palsy clinic at Nationwide Children's. Lia started her day by riding Princess, her last riding therapy class of the spring session. She has loved her weekly class, and hopefully we can pick them back up in the fall. My point, Lia had already had one therapy session today before we got to the CP clinic. Thankfully, the hour drive gave Lia the perfect opportunity for a nap before she had to start therapy session #2. Unfortunately, Lia did not wake up in the mood to deal with people poking and prodding her, let alone play the reindeer games that the doctors and therapist wanted her to. Reasoning with a 3 yr old does not go well, especially when said toddler is overly tired! Thankfully we did get her to walk with the brace on and off for them so they could evaluate her walk and gait. What they had to say was not the good news we were hoping for.
The double edged sword of Lia's brace is that while it is helping her to walk flat footed, it makes her hip rotate in even more than before. And, until she is older and can do the right exercises to strengthen her muscles in her hip, it is not going to get any better and quite probably get worse. Then the doctor told me that Lia had a growth spurt in the last 2 months and while her bones had grown, the muscles in her left side were not able to keep pace and had tightened some. Her left arm can't extend fully right now, so it is back to stretching exercises 3-4 times a day for a few months. We are so blessed to have such great care for Lia! Having a child with special needs is exhausting physically, mentally, and emotionally, but with God's strength we take it day by day and feel so blessed for this beautiful sweet little girl He has blessed us with. Some days are harder than others.
This week I had to face a child seeing Lia as "different." Judging her on her awkward gate an brace, not for the treasure that she is. While Lia and Addy were playing during Justin's soccer game, a little girl came over and stared at Lia playing. Yes, my sweet girl walks with a limp and wears a brace, but she is just like every other 3 year old. This child asked Addy why Lia had that thing on her leg. Taking it all in stride, as though it is totally normal for kids to wear braces and feeling the need to educate this girl, Addy told her about Lia's lefty leg, that she had died twice the day she was born, and that because of that she had to go to therapy and wear her lefty brace. And, she told her that Lia is still great at doing everything (ok this mama's heart was so proud by this point!) Then Addy asked her to join them. The girl did, and she played nicely with Lia, but it opened my eyes to the fact that Lia is growing up, and her differences are going to become more obvious. It breaks my heart because I know people can be mean, and kids can be worse.
So, when the ortho told me that Lia's gait was going to get worse before it got better, and that we had lost range of motion today, it was confirmation to me that there were going to be many more days when Lia was going to be stared at, laughed at, and left out because of her disability. I know the ortho and the PT/OTs all think that by 10 Lia could be walking normally and using her left hand much better, but at barely 3 that 10 year mark is feeling pretty far off. Before I get you thinking I have a huge pity party going, let me assure you I don't. Lia is a miracle. God has a plan for her, and she is perfectly and wonderfully created to fulfill the purpose that God has for her. I don't doubt that for a moment! Yes, right now is hard, but she has a family who loves her and a God who is bigger than any obstacle or hurt feelings she may face. So we'll chalk this doctor's appointment up to a small setback, but tomorrow is a new day. We'll give each day to Jesus, and let him work it out to be exactly what it is meant to be. In that, my friends, is where our hope comes from.
Monday, March 26, 2012
Luke is 1!
I can't believe a whole year has gone by since Luke was born. My labor with him was my longest, by far, and also one of my easiest. At least until the introduction of pitocin. Even though Luke started out at a mere 3 lb 1 oz, he has grown to a whopping 16 lb 8 oz! Not bad for only 12 months time :) Luke has been such a sweet addition to our family. He is pretty easy going, and loves his siblings. One big bump in the road was reflux. Thankfully after we started on Zantac he was like a new baby. He still wanted to be held a lot, but at least he wasn't screaming and screaming nonstop. Luke has discovered quite a few fun tricks in the last month. He squeals, says ba ba ba ba and then looks at you and waves, when he is hungry he smacks his high chair with his hand until I come feed him, and if he wants to nurse he pats my leg, arm, face, whatever is closest to get my attention before he gets verbal about his needs. He also started a cute new face. He scrunches up his nose and eyes and smiles really big. It is adorable! So, what kind of celebratin do you have for one so adorable? A bear party of course! And, I turned to Pinterest for help. We did have a last minute change of venue to my Mom's house, but all in all it was a fun family party. All the cousins came to play and celebrate with us :) Here is a picture of the cute cookies I made from a pin I found, and the cupcakes I adapted from some monkey cupcakes that we made for my cousin's baby shower.
The kids all loved them, and they were really easy. I used cookie icing for the bear's eyes and mouth. It hardened and kept its shape really well. Luke loved being sung to, but skipped the birthday cupcakes in favor of some play time. I must say I wasn't to hurt that he didn't want cupcakes! He did munch on some Cheerios while everyone else ate cake and ice cream. What a great way to celebrate the blessing of our littlest man's first year!
The kids all loved them, and they were really easy. I used cookie icing for the bear's eyes and mouth. It hardened and kept its shape really well. Luke loved being sung to, but skipped the birthday cupcakes in favor of some play time. I must say I wasn't to hurt that he didn't want cupcakes! He did munch on some Cheerios while everyone else ate cake and ice cream. What a great way to celebrate the blessing of our littlest man's first year!
Friday, February 24, 2012
Best Gluten Free Peanutbutter Cookies! Double or Triple it, really!
Here is the recipe for these delicious cookies:Ingredients
- 1 cup peanut butter
- 1 cup white sugar
- 1 egg
Directions
- Preheat oven to 350 degrees F (180 degrees C).
- Combine ingredients and roll about a tablespoon of dough into a ball and place on cookie sheet. Make crisscross marks on each cookie using a fork to gently press and flatten. Bake for 8-10 minutes. Let cool. Like I said, you probably want to double or triple these cookies. They go fast!
Subscribe to:
Posts (Atom)