I may not be able to afford this right away but eventually I will have a room like this in my store. I'm really excited about it. It's going to be awesome!
For those of you that don't remember, I'm going to be opening a store catering to blind and visually impaired people. Eventually, it will expand to include many disabilities.
Elena
Saturday, December 17, 2011
Friday, December 16, 2011
Local Resources
So one of my readers (I have readers! So exciting!) asked about local resources and things to expect with a blind infant. Instead of doing a personal email, I thought I'd post what I know so everyone can benefit. I will do two entries, one on resources and one on what to expect. (It's too much for one entry.)
For anyone who doesn't know or doesn't remember. I live in Orem, Utah. The resources I'm going to be listing are for my area. If you don't live in this area, contact local groups, probably starting with your local hospital or doctor if you don't know of any groups, to see what resources are near you. If you find some, I'd love to hear about them and post them so others can be helped. Those that do live in Utah, feel lucky. You are blessed to live in a state with good resources that many states don't have.
When you first find out your child is blind there is no doubt some major stuff going through your head. I don't remember there being an exact moment the doctor said Elena was blind, it was more a slow gathering of information, so it wasn't like a hit in the face. I am grateful for that. I do remember thinking "How am I going to care for this child? Not only am I a first time mom but I have no idea how to raise a blind child." I took some time to ponder my thoughts and then took in a deep breathe and said "Now tell me what I need to do." Not all people have this reaction. Elena's father had the "her life is ruined" philosophy. This isn't necessarily a bad thing. It's how he felt and he didn't know enough about the blind community to think differently. Now he has changed his thinking.
Anyway, if you don't already have medical insurance, the first thing you should do is look into getting Medicaid. If you're under the income limit, your child is almost guaranteed to get it because he/she is blind. Also, look into getting Social Security Income. Again, almost guaranteed since he/she is blind. I didn't find out about SSI until I was in real need of the money. The case worker said I should have applied when I first found out she was blind because I could have gotten the money starting from way back then. During your qualification interview, if you bring a form to the SSI office from your child's doctor stating that he/she is blind then it will shorten the waiting period before you are qualified. (I didn't have the note and only had MRI forms so I had to wait 2 or 3 months.) SSI money can be used to pay medical bills for your child, clothes, toys, even help with rent or utilities. (They will give you a handbook explaining everything it can be used for.) Medicaid is supposed to pay for "assisted technology" but I don't know yet what exactly that includes. In reading the description, it seems that it will pay for your child's canes. I will be ordering a new cane for Elena soon so I'll let you know how that works.
Anyway, once you have a diagnosis, the first thing you should do, after taking that moment for yourself, is call Kids on the Move (KOTM). Their office is in Orem. They have an Early Intervention program. They will send someone to your home to interact with your child and determine if he/she qualifies for services. Being blind, I'd say you're probably guaranteed to qualify. They do ask about your income. They charge on a sliding scale but most people don't have to pay. (They have a chart on their website.) After the evaluation, they will tell you what services your child qualifies for. At the beginning, Elena had Occupational therapy, Physical therapy, Vision therapy, Developmental therapy and I think there was one more but I can't remember. Since then she has also had Speech therapy and Behavior therapy. Each therapist will make goals with you that are personalized to your child's abilities. Every few months they will go over the goals and make new ones, if necessary. And here's the best part, they come to your house! It's so nice to have them come to you. It's like the old days of house calls. :) Don't let this list of therapists scare you. Depending on the needs of your child, these therapists could only be a temporary thing, like they were for Elena.
Although the Parent Infant Program (PIP) isn't part of KOTM, they do work with them. (PIP is part of the Utah School for Deaf and Blind.) This is where your Vision therapist will come from. This therapist is full of info so ask as many questions as you can think of. Elena had two Vision therapists. Her first one wasn't around for long, I think she moved, but she was good with Elena. Her next therapist was/is amazing! I love Pam Peck. She was my daughter's Vision therapist for two years. We would continue seeing her now except that my daughter has turned 3 so she gets new therapists who work through the school district. I don't think you can request certain therapists but you can always try cause Pam is great and was always willing to go the extra mile to help or find out any info I needed or wanted.
While we are on the subject of therapists, I want to mention Elena's physical therapist. Although KOTM offered a physical therapist, we were already going to someone else so we just stayed with the person we were with. His name is Ben Norton and anyone who has read my past blogs should recognize his name. He works in Orem. His building is right next to the KOTM building. He works at Intermountain Pediatric Rehabilitation. (Although I gave the website, here's the phone number so you don't have to search for it. 801-714-3505) Ben is SO patient and always happy. I don't know how he does it. For the first 6 months, AT LEAST, EVERY single appointment Elena would cry the whole appointment (she didn't like us making her sit up or other things she didn't want to do) but Ben was always quiet when he talked to her. He'd sing songs and use toys to help calm her and entertain her. And he always remembered us. I have a doc that never seems to know how I am or what's going on with my life but Ben is totally different. He'll greet us by name and even ask about how Elena and I are doing. (Like asking how my finals went or how my parents are doing.) I recommend highly him. Elena's Healthy U Medicaid pays for it.
Once you've started on that, find a Pediatric Endocrinologist.(Medicaid pays for it.) Some people might try to tell you a regular Endocrin is fine but it's not. Elena is seeing Dr. Carol Foster at the Utah Diabetes Center in Salt Lake (close to primary children's hospital). Despite the name, they do more than diabetes stuff. They have pediatric endocrinologists that are really nice and seem to really know their stuff. With ONH, comes hormone problems usually so getting the cortisol, thyroid and growth hormones checked is important. (Just so you know, having a thyroid condition is no big deal. I have a thyroid condition, as does my mom, and I just have to take 1 pill a day and they are cheap, although Medicaid would pay for it if i still had Medicaid.) Your Endocrinologist will do blood tests every 6 months to a year, depending on test results. It's smart to continue testing throughout your child's life because they can develop problems even if they don't have any now. If your child's veins are small or they move around a lot while doing blood test, I'd suggest asking for the IV Team (I think that's what they are called). This is a small team of people that only do IV's and blood tests so they are very good at it. It took a couple times of being poked a half dozen times before someone told me about them. If you do ask for the IV team, they will send you to Primary Children's Hospital (it's only 1 or 2 streets over) because that's where the team is.
Sleep problems are also a side affect of ONH so keep an eye on your child's sleeping patterns. I haven't had many major sleeping issues with Elena until recently. I am currently looking for a Sleep Specialist with experience with blind children. If/when I find one I will let yall know. If your child has some light perception you might not have this problem. Since Elena doesn't see anything she doesn't have light to tell her body it's time to sleep or wake so her system is all out of whack. I have been told using Melatonin is helpful.
You will also need to get an O&M (Orientation and Mobility) therapist. Your Vision therapist can help with that. I would give you the name of Elena's but he wasn't very good and she has a new one now that she is with the school district. Her new one is Jalayne Engberg. An O&M teaches your child to use a cane and, when he/she gets older, how to travel independently, like crossing streets. Although you may think, or be told, that your 1 year old is too young for a cane, especially if he/she can't walk yet, don't listen. Just like with braille and textures, it's best to start them young. You can get a free cane from the National Federation of the Blind. Although I don't like the tip, it's a good starter. (Check out my entry on toddler canes.) Your O&M can also get you a cane, although you won't be using an O&M until your child can walk. (Elena was 2 before she walked independently.)
The School for the Deaf and Blind has a playgroup for children 18 months to 3 years old. You must have current immunizations or a doctors exemption. As far as I know, Pam Peck is still running it. The Orem group meets at the school for blind. It's a trailer behind Westmore Elementary right off Main ST. and 1100 South. It meets Mondays at 10:30am for about an hour. Although this info is current, they do change the day and time of the playgroup sometimes so ask your vision therapist if you need more/updated info. I do not know where the other two groups meet but I believe they are south, around Springville. I will find out and let yall know.
AGE 3
Once your child turns 3, he/she will start doing things with the school district's therapists. Your Vision therapist and KOTM will help with the transition. Elena's current Vision therapists are Donna Neibaur and Melanie (I forgot her last name). She has a braille lesson with them before pre-school. She also has an O&M who works with her at school. Once a month, she has an O&M field trip with other vision students from the area. Now that she's in school, all her therapy takes place while at school. She does still see her physical therapist, although not as often as she used to.
Since Elena is only 3, I can't help much on resources or what to expect after pre-school. I'm learning as I go and will post anything I do learn. (Soon, I will post an entry on my opinion of local blind and district pre-k.) I will say this though, just because your child will be seeing therapists and getting braille instruction don't think your job is done. You still need to work with your child at home. Your therapists will be happy to give you exercises to work on at home with your child and there are places that give out free or cheap braille books (Seedlings is cheap.) Learn braille yourself so you can help your child as he/she gets older. A great tool is "Just Enough to Know Better". I don't remember how but I got it free. Ask your Vision therapist. They might be able to get it for you free. Your vision therapist can get you a brailler, on loan, and show you how to use it so you can make braille labels for books and things. Have your child experiences all kinds of textures. Just get involved.
For anyone who doesn't know or doesn't remember. I live in Orem, Utah. The resources I'm going to be listing are for my area. If you don't live in this area, contact local groups, probably starting with your local hospital or doctor if you don't know of any groups, to see what resources are near you. If you find some, I'd love to hear about them and post them so others can be helped. Those that do live in Utah, feel lucky. You are blessed to live in a state with good resources that many states don't have.
When you first find out your child is blind there is no doubt some major stuff going through your head. I don't remember there being an exact moment the doctor said Elena was blind, it was more a slow gathering of information, so it wasn't like a hit in the face. I am grateful for that. I do remember thinking "How am I going to care for this child? Not only am I a first time mom but I have no idea how to raise a blind child." I took some time to ponder my thoughts and then took in a deep breathe and said "Now tell me what I need to do." Not all people have this reaction. Elena's father had the "her life is ruined" philosophy. This isn't necessarily a bad thing. It's how he felt and he didn't know enough about the blind community to think differently. Now he has changed his thinking.
Anyway, if you don't already have medical insurance, the first thing you should do is look into getting Medicaid. If you're under the income limit, your child is almost guaranteed to get it because he/she is blind. Also, look into getting Social Security Income. Again, almost guaranteed since he/she is blind. I didn't find out about SSI until I was in real need of the money. The case worker said I should have applied when I first found out she was blind because I could have gotten the money starting from way back then. During your qualification interview, if you bring a form to the SSI office from your child's doctor stating that he/she is blind then it will shorten the waiting period before you are qualified. (I didn't have the note and only had MRI forms so I had to wait 2 or 3 months.) SSI money can be used to pay medical bills for your child, clothes, toys, even help with rent or utilities. (They will give you a handbook explaining everything it can be used for.) Medicaid is supposed to pay for "assisted technology" but I don't know yet what exactly that includes. In reading the description, it seems that it will pay for your child's canes. I will be ordering a new cane for Elena soon so I'll let you know how that works.
Anyway, once you have a diagnosis, the first thing you should do, after taking that moment for yourself, is call Kids on the Move (KOTM). Their office is in Orem. They have an Early Intervention program. They will send someone to your home to interact with your child and determine if he/she qualifies for services. Being blind, I'd say you're probably guaranteed to qualify. They do ask about your income. They charge on a sliding scale but most people don't have to pay. (They have a chart on their website.) After the evaluation, they will tell you what services your child qualifies for. At the beginning, Elena had Occupational therapy, Physical therapy, Vision therapy, Developmental therapy and I think there was one more but I can't remember. Since then she has also had Speech therapy and Behavior therapy. Each therapist will make goals with you that are personalized to your child's abilities. Every few months they will go over the goals and make new ones, if necessary. And here's the best part, they come to your house! It's so nice to have them come to you. It's like the old days of house calls. :) Don't let this list of therapists scare you. Depending on the needs of your child, these therapists could only be a temporary thing, like they were for Elena.
Although the Parent Infant Program (PIP) isn't part of KOTM, they do work with them. (PIP is part of the Utah School for Deaf and Blind.) This is where your Vision therapist will come from. This therapist is full of info so ask as many questions as you can think of. Elena had two Vision therapists. Her first one wasn't around for long, I think she moved, but she was good with Elena. Her next therapist was/is amazing! I love Pam Peck. She was my daughter's Vision therapist for two years. We would continue seeing her now except that my daughter has turned 3 so she gets new therapists who work through the school district. I don't think you can request certain therapists but you can always try cause Pam is great and was always willing to go the extra mile to help or find out any info I needed or wanted.
While we are on the subject of therapists, I want to mention Elena's physical therapist. Although KOTM offered a physical therapist, we were already going to someone else so we just stayed with the person we were with. His name is Ben Norton and anyone who has read my past blogs should recognize his name. He works in Orem. His building is right next to the KOTM building. He works at Intermountain Pediatric Rehabilitation. (Although I gave the website, here's the phone number so you don't have to search for it. 801-714-3505) Ben is SO patient and always happy. I don't know how he does it. For the first 6 months, AT LEAST, EVERY single appointment Elena would cry the whole appointment (she didn't like us making her sit up or other things she didn't want to do) but Ben was always quiet when he talked to her. He'd sing songs and use toys to help calm her and entertain her. And he always remembered us. I have a doc that never seems to know how I am or what's going on with my life but Ben is totally different. He'll greet us by name and even ask about how Elena and I are doing. (Like asking how my finals went or how my parents are doing.) I recommend highly him. Elena's Healthy U Medicaid pays for it.
Once you've started on that, find a Pediatric Endocrinologist.(Medicaid pays for it.) Some people might try to tell you a regular Endocrin is fine but it's not. Elena is seeing Dr. Carol Foster at the Utah Diabetes Center in Salt Lake (close to primary children's hospital). Despite the name, they do more than diabetes stuff. They have pediatric endocrinologists that are really nice and seem to really know their stuff. With ONH, comes hormone problems usually so getting the cortisol, thyroid and growth hormones checked is important. (Just so you know, having a thyroid condition is no big deal. I have a thyroid condition, as does my mom, and I just have to take 1 pill a day and they are cheap, although Medicaid would pay for it if i still had Medicaid.) Your Endocrinologist will do blood tests every 6 months to a year, depending on test results. It's smart to continue testing throughout your child's life because they can develop problems even if they don't have any now. If your child's veins are small or they move around a lot while doing blood test, I'd suggest asking for the IV Team (I think that's what they are called). This is a small team of people that only do IV's and blood tests so they are very good at it. It took a couple times of being poked a half dozen times before someone told me about them. If you do ask for the IV team, they will send you to Primary Children's Hospital (it's only 1 or 2 streets over) because that's where the team is.
Sleep problems are also a side affect of ONH so keep an eye on your child's sleeping patterns. I haven't had many major sleeping issues with Elena until recently. I am currently looking for a Sleep Specialist with experience with blind children. If/when I find one I will let yall know. If your child has some light perception you might not have this problem. Since Elena doesn't see anything she doesn't have light to tell her body it's time to sleep or wake so her system is all out of whack. I have been told using Melatonin is helpful.
You will also need to get an O&M (Orientation and Mobility) therapist. Your Vision therapist can help with that. I would give you the name of Elena's but he wasn't very good and she has a new one now that she is with the school district. Her new one is Jalayne Engberg. An O&M teaches your child to use a cane and, when he/she gets older, how to travel independently, like crossing streets. Although you may think, or be told, that your 1 year old is too young for a cane, especially if he/she can't walk yet, don't listen. Just like with braille and textures, it's best to start them young. You can get a free cane from the National Federation of the Blind. Although I don't like the tip, it's a good starter. (Check out my entry on toddler canes.) Your O&M can also get you a cane, although you won't be using an O&M until your child can walk. (Elena was 2 before she walked independently.)
The School for the Deaf and Blind has a playgroup for children 18 months to 3 years old. You must have current immunizations or a doctors exemption. As far as I know, Pam Peck is still running it. The Orem group meets at the school for blind. It's a trailer behind Westmore Elementary right off Main ST. and 1100 South. It meets Mondays at 10:30am for about an hour. Although this info is current, they do change the day and time of the playgroup sometimes so ask your vision therapist if you need more/updated info. I do not know where the other two groups meet but I believe they are south, around Springville. I will find out and let yall know.
AGE 3
Once your child turns 3, he/she will start doing things with the school district's therapists. Your Vision therapist and KOTM will help with the transition. Elena's current Vision therapists are Donna Neibaur and Melanie (I forgot her last name). She has a braille lesson with them before pre-school. She also has an O&M who works with her at school. Once a month, she has an O&M field trip with other vision students from the area. Now that she's in school, all her therapy takes place while at school. She does still see her physical therapist, although not as often as she used to.
Since Elena is only 3, I can't help much on resources or what to expect after pre-school. I'm learning as I go and will post anything I do learn. (Soon, I will post an entry on my opinion of local blind and district pre-k.) I will say this though, just because your child will be seeing therapists and getting braille instruction don't think your job is done. You still need to work with your child at home. Your therapists will be happy to give you exercises to work on at home with your child and there are places that give out free or cheap braille books (Seedlings is cheap.) Learn braille yourself so you can help your child as he/she gets older. A great tool is "Just Enough to Know Better". I don't remember how but I got it free. Ask your Vision therapist. They might be able to get it for you free. Your vision therapist can get you a brailler, on loan, and show you how to use it so you can make braille labels for books and things. Have your child experiences all kinds of textures. Just get involved.
Thursday, December 15, 2011
Endocrinology results
So I called Elena's Endocrinologist today because I hadn't heard back her test results from back in August. Turns out, since the blood was drawn during her MRI the results were sent to the Neurologist instead of the Endocrinologist. I figured that had happened. Anyway, I have the results now.
Thyroid - middle normal
Growth - low normal
Cortisol - middle normal
That's good to hear. I'm a little concerned about the growth but I'm just glad the rest is ok. I'm just waiting for the day that she'll need thyroid meds. I'd be surprised if she never needs it. Not only is she more likely to get it because of having ONH but it also runs in the women of my family. I have have it. My mom has it and her mom had it. I don't know any further back than that but am told it does go back further.
She has another appointment in May to re-test everything. If her growth hormones are the same or lower they may want to do hormone treatments. I'm not sure how I feel about that. I want what's best for her but I also don't want to cause problems if the hormones do more to hurt than help or something bad happens. They said they wanted to do a xray at age 4 to check out her bones so I think I'll wait til then, if they say she needs it, just to be safe. The nurse I spoke to gave me the name of 3 growth hormones that they might use and that are covered by my insurance. They are Nutropin, Genotropin, and Nordatropin. (Hope I spelled those right.) I'm going to go research them. If anyone knows anything about these drugs or about using growth hormones I'd love to hear from you.
Thyroid - middle normal
Growth - low normal
Cortisol - middle normal
That's good to hear. I'm a little concerned about the growth but I'm just glad the rest is ok. I'm just waiting for the day that she'll need thyroid meds. I'd be surprised if she never needs it. Not only is she more likely to get it because of having ONH but it also runs in the women of my family. I have have it. My mom has it and her mom had it. I don't know any further back than that but am told it does go back further.
She has another appointment in May to re-test everything. If her growth hormones are the same or lower they may want to do hormone treatments. I'm not sure how I feel about that. I want what's best for her but I also don't want to cause problems if the hormones do more to hurt than help or something bad happens. They said they wanted to do a xray at age 4 to check out her bones so I think I'll wait til then, if they say she needs it, just to be safe. The nurse I spoke to gave me the name of 3 growth hormones that they might use and that are covered by my insurance. They are Nutropin, Genotropin, and Nordatropin. (Hope I spelled those right.) I'm going to go research them. If anyone knows anything about these drugs or about using growth hormones I'd love to hear from you.
Saturday, December 10, 2011
Optic Nerve Hypoplasia Interview
I found this video in which a doctor is being interviewed about Optic Nerve Hypoplasia. Although I already knew much of what he said, I found it interesting and did learn some new things. For people new to ONH, I highly recommend listening to this. Actually, I recommend this to everyone.
http://blindhow.com/posts/295#content
Dr. Borchert discusses Optic Nerve Hypoplasia, his current research and answers questions from a telephone audience.
Telephone conference is moderated by Dr. Bill Takeshita. Dr. Bill is Chief of Optometric Services at the Center for the Partially Sighted & the Consulting Director of Low Vision Education at the Braille Institute of America.
http://blindhow.com/posts/295#content
Dr. Borchert discusses Optic Nerve Hypoplasia, his current research and answers questions from a telephone audience.
Telephone conference is moderated by Dr. Bill Takeshita. Dr. Bill is Chief of Optometric Services at the Center for the Partially Sighted & the Consulting Director of Low Vision Education at the Braille Institute of America.
Thursday, December 8, 2011
Braille shirts
I have unofficially started my new TRADEMARKED t-shirt line called "Rock the Dots". I made 2 shirts for Elena. I started thinking I'd do puff paint but then saw the iron on rhinestones and thought it would be cutter. And it is! I'm so proud of myself. It took WAY longer than I thought it would to arrange the rhinestones and, sadly, a couple moved and messed up the spelling but they look super cute. Some of the rhinestones don't look very secure either so I'm hoping they will stay on. I'll see tomorrow after Elena wears her new shirt to school. I'm so excited!!!!!! Can't ya tell? lol
The pink one says "princess elena" and the black one says "rock the dots". There is no capital letter sign but I think it still looks good. I saw a cute skull and cross-bones with a bow made from silver rhinestones that I think I'll use in my next shirt. It would totally go with the "rock the dots" theme.
Monday, November 21, 2011
Quick
Wow it's been awhile. Sorry yall. School has been keeping me pretty busy. I don't have my pictures or anything that I wanted to post so I'm just going to do a super quick update. Elena started preschool end of September. Long story short, we decided to put her in a sighted, district classroom instead of the local School for the Blind. (She still gets all the services she would if she were at the other school.) She seems to really like it and the teachers are absolutely in love with her, of course. :D I already knew she was smart but it's cool to hear the teachers tell me about things Elena is doing and how she's surprising them. We are planning on redoing her IEP soon, probably after Christmas break, because she's already accomplished most of her goals. (She's as good on the brailler as the kindergartners.) I'm not surprised by this. Like I've said, she's a genius. I'm so proud.
Her social skills are getting better, according to her teachers. They says she's actually interacting with the other kids now, instead of ignoring them. We don't have many play-dates so I personally haven't seen her interact with kids lately. Her communication skills are still very much behind but she's getting a little better. She will ask for some simple stuff with one word (like "drink") so that's a huge improvement.
She is exploring more around the house. Good for her but bad for me. I'm having to be more careful about things I leave out, even on the counters. She loves calling her dad and grandparents. She'll find my phone and say "Call Granma" or "Call Daddy". Half the time when I call she doesn't even say anything and the other half she just copies what the other person says but it's still super cute.
I think that's it for now.
Her social skills are getting better, according to her teachers. They says she's actually interacting with the other kids now, instead of ignoring them. We don't have many play-dates so I personally haven't seen her interact with kids lately. Her communication skills are still very much behind but she's getting a little better. She will ask for some simple stuff with one word (like "drink") so that's a huge improvement.
She is exploring more around the house. Good for her but bad for me. I'm having to be more careful about things I leave out, even on the counters. She loves calling her dad and grandparents. She'll find my phone and say "Call Granma" or "Call Daddy". Half the time when I call she doesn't even say anything and the other half she just copies what the other person says but it's still super cute.
I think that's it for now.
Monday, September 19, 2011
Do I have a Strider Rider?
ELENA GOT HER FIRST BIKE TODAY!!! Can you tell I'm excited? I was so stoked I had to call me Mom like 5 seconds after I bought it. lol. I'm more excited than Elena is. After 3 seconds on the bike she was ready to get off. The 3rd try was a lot better though.
The bike is a Strider Running Bike. It's a really small bike, perfect for toddlers, that has no pedals. It's supposed to help them learn balance faster. From everything I've read, it's true. There are many kids who started this bike at 18 - 24 months old and by 3 are riding regular big kid bikes. My hope is that it will help Elena get more confidant in not only her bike balance but her walking balance as well. She walks fine but she's very hesitant still and her balance is bad. If she changes from carpet to tile she almost falls. I'm not surprised by that though. Balance is kind of a visual thing.
She has tried her bike about 3 times today. The first 2 times were no more than 3 minutes long. The 3rd time we went outside and I held onto her so she'd get how it was supposed to work. She liked it as long as I held on. hhhmmm. I also sang to try to encourage her to walk with teh bike. That's what we did when teaching her to walk so I thought it would help. She just kind of marched in place. I can see a tiny improvement though, like she's not falling over the second I let go, so I'm optimistic. I know it will take time. I bought it for her now, instead of at Christmas, because I wanted her to be able to ride it before the snow came. Maybe by then she'll be a pro!
Happy 3rd Birthday!
I feel bad it's been so long since I last wrote. Elena has had a birthday. She's 3! Her birthday was August 30th. (Her dad's bday is the day before. Kind of cool.) Since then school has started again for me and I just haven't had the time to update like I should. Sorry ya'll. Anyway, here are some pics from her party.
The book was a gift from her vision therapist. Now that she's 3, she will get a new therapist. I'm sad about that. Pam was great and was such a big part of Elena's life since she was about 8 months old. We'll probably still see her occasionally at activities for the blind but it's not the same.
I made the cake. Just a simple chocolate cake with vanilla frosting and skittle flowers. I didn't have the energy to make a cool cake like I have the past 2 years (Lady Bug and then Butterfly with cupcake flowers.) It still tasted great though.
The dress was special for her birthday. It was so cute I just HAD to buy it. I had a pink and leopard print bow on her too but she kept taking it off.
The soccer ball beeps. I thought it would be better than one with bells because she could find it even when it's not moving.
The book was a gift from her vision therapist. Now that she's 3, she will get a new therapist. I'm sad about that. Pam was great and was such a big part of Elena's life since she was about 8 months old. We'll probably still see her occasionally at activities for the blind but it's not the same.
I made the cake. Just a simple chocolate cake with vanilla frosting and skittle flowers. I didn't have the energy to make a cool cake like I have the past 2 years (Lady Bug and then Butterfly with cupcake flowers.) It still tasted great though.
The dress was special for her birthday. It was so cute I just HAD to buy it. I had a pink and leopard print bow on her too but she kept taking it off.
The soccer ball beeps. I thought it would be better than one with bells because she could find it even when it's not moving.
Wednesday, August 17, 2011
MRI and Endocrinologist
Wow it's been awhile since I last posted. Sorry about that. Guess I should update ya'll on what's going on with Elena. First, the doctors. In the past month or so Elena has been to her pediatric Endocrinologist and has gotten her 3rd MRI. (She's had a MRI every year around her birthday.)
Endocrin:
Not a whole lot happened at this appointment. She was supposed to get some blood work done but since they saw she was going to get an MRI gone a couple weeks after her Endocrin appointment they decided to wait and get the blood when they poke her for the MRI. Although I was kind of annoyed that I drove an hour to the appointment and they didn't even take any blood, I was glad Elena would only have to go through getting poked once.
They measured her height and weight, which I didn't catch cause they did it really quick. Then the doc talked to me for a little while about Elena's size. Her height to weight ratio is good but she is still very small for her age. Her appointment was in late July so that's about a month before her birthday and the doc said she is as tall as a 21 month old. The doctor did not say this next part but I think she weighs as much as a one year old. I say this because they say kids have to be at least 20 lbs before being able to sit in a forward facing car seat and that's usually around one. The doctor said that she could be a late bloomer or she could be small because of not producing enough growth hormone because her pituitary gland has been affected by her eye condition. (We are leaning toward the 2nd reason.) Last year they checked her growth hormones and they were low but normal. I'm just waiting now to hear back about he latest test.
The doctor said she doesn't want to give Elena growth hormones unless we have to but if she doesn't start growing we may have to. Luckily, it will be at least a year before we consider giving her anything. It will be a year because we have to wait until she is 4. The doctor wants to do an x-ray of Elena's bones. This will help tell her is Elena is small because she is a late bloomer or because of hormones. The problem is, until age 4, bones don't show up on an x-rays. All you'll see is the outline of the skin and empty space. Crazy huh?! This is because the bones haven't mineralized or something like that. So after Elena turns 4 she will get an x-ray and we will decide whether or not she needs growth hormones. I really hope she doesn't.
They are also monitoring her thyroid and other hormones. I'm hoping all is well cause I don't want to give her hormone shots. She'd get poked with a needle everyday and who knows what the side affects are. It's scary to think about. At least it will be a few years before I have to worry about that stuff.
MRI:
Her MRI was on the 12th at Primary Children's Hospital in Salt Lake City. This place is great. Everyone seems to really know what they are doing and they are all really nice. Her appointment was scheduled for 9:30am but she didn't get put to sleep until 11:30am. I wasn't surprised. We'd done 2 of these already so I know how they work. Also, I requested the IV Team this time so we had to wait for them. The IV Team is a small group of about 2 or 3 people who only do IVs on little kids. That's it. That's all they do all day every day so they are really good at it. People always have a really hard time with Elena's veins and last time she went home with about 6 band-aids cause they tried so many times. I wasn't going to let that happen this time. The IV team did it in one shot, although the almost had to do it again.
Usually we need 4 people just to hold her down so they can put in the needle. She is surprisingly strong, yet no one believes me. They'd get one person to hold her, besides me, and then be surprised that Elena was getting away. She is very strong and if you don't watch out she'll kick you in the face, as one of the nurses found out last time. lol I was pleasntly surprised that the nurse this time believed me and even more pleasantly surprised at how non-resistant Elena was. Usually, she's kicking, screaming, waving her arms, arching her back, anything she can do to get away. This time she just laid there and cried. She even tapped her hand (the one that wasn't getting poked) to the rhythm of the songs I was singing to her.
It was sad and sweet at the same time. Before they came in to put in the needle I was telling Elena she was awesome because of how well behaved she was and by letting them do all their tests. Then when they put the needle in she cried then through the tears said "I'm awesome!" It was so sweet, yet sad. All the nurses went "Aaaaawwwww." It was really sad when she kept saying "All done please. All done please. Take it off please." She was so good. I was so proud of her.
Afterward, we sat in a rocking chair while we waited for them to get the meds and she held her arm and felt the bandage and kept saying "Take it off please". I told her she had a big band-aid on her arm and we couldn't take it off . Then she kept saying "You have a big band-aid on your arm. It's kind of rough". She said it was rough because I was trying to distract her by having her feel the texture. She was so cute. We rocked and sang songs until they came to put her to sleep. I sang the "Monkey's jumping the the bed" song so many times I never want to hear that song again!
About the time they started putting her to sleep, her dad called. She was already kind of out of it so she didn't say anything but I like to think she liked hearing her dad's voice before she drifted off. She "fell" asleep in my arms and I carried her to the MRI room. The nurse took her from me and put her in the MRI. I got to watch while they hooked her up to all the monitors.
When they were done, they brought her to the recovery room where I was waiting and laid her on a bed. They let her sleep for about 20-30 minutes before they had me start trying to wake her up. That is very hard to do when they are all drugged up and she was not happy. She'd wake up long enough to scream angrily at me and then fall back asleep. At one point I was holding her and she peed through her diaper. I had brought a change of clothes for her but now I needed new clothes! The nurses make sure she ate and/or drank something before leaving. She slept the whole hour ride back and after having some time to really wake up was a happy girl. In fact, she was happier than usual. Guess there's nothing like a drug induced nap to make you feel well-rested. lol
We meet with her Neurologist in November to discuss the MRI results. I'm on a cancellation list for earlier though. I hope we can get an earlier appointment cause November is really far away.
Endocrin:
Not a whole lot happened at this appointment. She was supposed to get some blood work done but since they saw she was going to get an MRI gone a couple weeks after her Endocrin appointment they decided to wait and get the blood when they poke her for the MRI. Although I was kind of annoyed that I drove an hour to the appointment and they didn't even take any blood, I was glad Elena would only have to go through getting poked once.
They measured her height and weight, which I didn't catch cause they did it really quick. Then the doc talked to me for a little while about Elena's size. Her height to weight ratio is good but she is still very small for her age. Her appointment was in late July so that's about a month before her birthday and the doc said she is as tall as a 21 month old. The doctor did not say this next part but I think she weighs as much as a one year old. I say this because they say kids have to be at least 20 lbs before being able to sit in a forward facing car seat and that's usually around one. The doctor said that she could be a late bloomer or she could be small because of not producing enough growth hormone because her pituitary gland has been affected by her eye condition. (We are leaning toward the 2nd reason.) Last year they checked her growth hormones and they were low but normal. I'm just waiting now to hear back about he latest test.
The doctor said she doesn't want to give Elena growth hormones unless we have to but if she doesn't start growing we may have to. Luckily, it will be at least a year before we consider giving her anything. It will be a year because we have to wait until she is 4. The doctor wants to do an x-ray of Elena's bones. This will help tell her is Elena is small because she is a late bloomer or because of hormones. The problem is, until age 4, bones don't show up on an x-rays. All you'll see is the outline of the skin and empty space. Crazy huh?! This is because the bones haven't mineralized or something like that. So after Elena turns 4 she will get an x-ray and we will decide whether or not she needs growth hormones. I really hope she doesn't.
They are also monitoring her thyroid and other hormones. I'm hoping all is well cause I don't want to give her hormone shots. She'd get poked with a needle everyday and who knows what the side affects are. It's scary to think about. At least it will be a few years before I have to worry about that stuff.
MRI:
Her MRI was on the 12th at Primary Children's Hospital in Salt Lake City. This place is great. Everyone seems to really know what they are doing and they are all really nice. Her appointment was scheduled for 9:30am but she didn't get put to sleep until 11:30am. I wasn't surprised. We'd done 2 of these already so I know how they work. Also, I requested the IV Team this time so we had to wait for them. The IV Team is a small group of about 2 or 3 people who only do IVs on little kids. That's it. That's all they do all day every day so they are really good at it. People always have a really hard time with Elena's veins and last time she went home with about 6 band-aids cause they tried so many times. I wasn't going to let that happen this time. The IV team did it in one shot, although the almost had to do it again.
Usually we need 4 people just to hold her down so they can put in the needle. She is surprisingly strong, yet no one believes me. They'd get one person to hold her, besides me, and then be surprised that Elena was getting away. She is very strong and if you don't watch out she'll kick you in the face, as one of the nurses found out last time. lol I was pleasntly surprised that the nurse this time believed me and even more pleasantly surprised at how non-resistant Elena was. Usually, she's kicking, screaming, waving her arms, arching her back, anything she can do to get away. This time she just laid there and cried. She even tapped her hand (the one that wasn't getting poked) to the rhythm of the songs I was singing to her.
It was sad and sweet at the same time. Before they came in to put in the needle I was telling Elena she was awesome because of how well behaved she was and by letting them do all their tests. Then when they put the needle in she cried then through the tears said "I'm awesome!" It was so sweet, yet sad. All the nurses went "Aaaaawwwww." It was really sad when she kept saying "All done please. All done please. Take it off please." She was so good. I was so proud of her.
Afterward, we sat in a rocking chair while we waited for them to get the meds and she held her arm and felt the bandage and kept saying "Take it off please". I told her she had a big band-aid on her arm and we couldn't take it off . Then she kept saying "You have a big band-aid on your arm. It's kind of rough". She said it was rough because I was trying to distract her by having her feel the texture. She was so cute. We rocked and sang songs until they came to put her to sleep. I sang the "Monkey's jumping the the bed" song so many times I never want to hear that song again!
About the time they started putting her to sleep, her dad called. She was already kind of out of it so she didn't say anything but I like to think she liked hearing her dad's voice before she drifted off. She "fell" asleep in my arms and I carried her to the MRI room. The nurse took her from me and put her in the MRI. I got to watch while they hooked her up to all the monitors.
When they were done, they brought her to the recovery room where I was waiting and laid her on a bed. They let her sleep for about 20-30 minutes before they had me start trying to wake her up. That is very hard to do when they are all drugged up and she was not happy. She'd wake up long enough to scream angrily at me and then fall back asleep. At one point I was holding her and she peed through her diaper. I had brought a change of clothes for her but now I needed new clothes! The nurses make sure she ate and/or drank something before leaving. She slept the whole hour ride back and after having some time to really wake up was a happy girl. In fact, she was happier than usual. Guess there's nothing like a drug induced nap to make you feel well-rested. lol
We meet with her Neurologist in November to discuss the MRI results. I'm on a cancellation list for earlier though. I hope we can get an earlier appointment cause November is really far away.
Wednesday, June 29, 2011
Sounds of the Park
We went to the park again and Elena started climbing the stairs to the slide. As she got to the top, she hit the railing with her hand. She immediately stopped and started hitting the railing and another pole, listening carefully each time. It was really cool to see how she listened to each pole and how they sounded different. Then I tapped on the slide so she could find it and she stopped to listen to that. It was cool. Everything has it's own sound and she's starting to figure them out.
Sunday, June 26, 2011
Possible Treatment for ONH
I've been reading a lot lately about people who are taking their kids to China for stem cell injections using umbilical cord stem cells. There has been lots of success and apparently, the younger the child is when they get this surgery the better the results. One story I read said they even saw overall brain improvement. I am looking for anyone who's been through this and can offer any information.
Wednesday, June 22, 2011
Toddler Canes
This is kind of a squeal to the post about helping them to start walking....I am still very confused about the many different types of canes and when it's appropriate to use which ones BUT I will tell ya'll which canes we have used.
We started with a 25 inch white cane through the free cane program by NFB (National Federation of the Blind). We got it when Elena was a year or maybe 18 months old. (Can't remember which but thinking closer to one year.) It had a round metal tip. Elena liked to tap it on the pavement and listen to the sound. Other than that, we didn't like it that much. She used to walk with her hand in the air, near her ear. Her physical therapist said it's just a muscle memory thing because she's used to holding out hand while she walks. Because of this, using such a lite weight cane meant she wouldn't hold her cane properly. In the beginning, she also kept her cane across her body, holding it with her right hand. It would often go between her legs. (Before you say anything, yes, I know part of this is due to her being a beginner to the cane.) When she did finally put her cane in front of her, the tip would get stuck in cracks on the pavement and would not move smoothly.
When she outgrew that cane, we got another one from her O&M (Orientation and Mobility). He gave us a 30 inch NFB cane with a small, rubber, white, rotating ball on the end. The rotating ball worked well while trying to teach Elena to move her cane from side to side (as well as a neat song we made up) but it was still to lite weight. It was also too long.
The next cane we tried was a success! (Also from her O&M.)It's a 28 inch white cane with red on the bottom. There is no label on it so I don't know who makes it. It has a thick rubber grip which, at first, Elena didn't seem to like. It has a hard, white, rotating ball on the end about the size of a tennis ball. This cane is heavier than the others and made Elena put her arm down. Because it rotates, it's great for exploring while moving it side to side. It moves very smoothly. It's also heavy and big enough that it doesn't get stuck in every sidewalk crack. Don't be worried that's it's too heavy for your kid, though. I think it's a perfect weight for beginners.
She has had some O&M training but most of it has come from her dad and I taking her on daily walks. I don't want to speak badly of the O&M but his visits seem pretty pointless. I'm sure it's just because she's so young and there's not much he can tell us that we don't already know or do with her. Don't think I'm saying not to contact your local O&M because you should. They are a help to parents who are new to cane traveling toddlers. For us, though, her physical therapist already told us many things that the O&M would later tell us and many things came naturally to us. For example, while taking her on walks, we'd bang on a stop sign post and have her find it with her cane. We had been doing this for a long time before her O&M came along and said to do the same thing. I'm not trying to sound boastful so please don't get me wrong.
Anyway, that's my experience with canes. If anyone wants to share their experiences with different types of canes or what situations are best for what canes that would be great. And I'm talking toddler or adult canes. I'm very interested in learning more.
Monday, June 20, 2011
Summer Fun
Elena loves playing in water and since it was so nice outside the other day I figured we'd go outside and have some water play. I don't have a kiddie pool yet and the biggest thing I could find was my mop bucket. I thought she'd just splash in it but as soon as she felt it, she wanted in. Can't believe she fit! lol
Saturday, June 18, 2011
Helping her get walking
(PIC- Practicing)
I was on a forum and there were a few people asking for advice for getting their 2 year olds walking so I thought I'd put my response on here, in case anyone wants to check it out.
Elena, who's almost 3, didn't start walking independently until about 2 months after she turned 2. In fact, we were at a Halloween store looking for costumes and she just started walking about the store! Everyone was right when they said one day she'd just up and start walking. Just like that. She had the physical strength to walk long before that but was scared. I did tons of exercises with her that made her VERY mad but was worth it. Start very small with letting her hand go while she's standing. Let go for only a couple seconds. Gradually add time. Keep doing this and then add distance between you. It sounds simple but it will take a long time to get her to do it. I know it did with my daughter. Every physical therapy session was filled with screams because she would cling to me for dear life.
(PIC- More practicing while holding onto adult cane for support and child's cane. It took her a long time before she'd hold her cane in front.)
One thing her therapist said to try was to have her hold a ace bandage or something else that stretches and you have the other end. That way she feels some support and comfort but you are still helping. Once she's comfortable with that, try having her hold a toy with no support from you. With Elena, just holding something, even if I wasn't on the other end, made her comfortable enough to try walking. You can also try holding her elbow instead of her hand. The elbow has very few nerves so she'll feel like she's not getting a lot of support but will be. I did this a lot while playing on the floor with her.
We also used musical toys or snacks to motivate her to walk to me. Making a big deal about her walking or even standing is important. You might feel silly at first, I know I did, but I've found it really helps. For Elena, this works better than a treat. I clap and yell "YAY! YOU DID IT! You stood up" and give hugs and kisses. Make sure you tell them what you are praising them for. They might not understand it yet but they will.
(PIC- Walking with the ring gave her confidence to walk by herself.)
I remember, before Elena started walking, I honestly wondered if she'd ever walk. I thought about it all the time and worried constantly. There were times when she didn't seem to be making any progress. I thought I must have been doing something wrong. Thank goodness for Elena's therapists. They kept telling me I was doing everything I was supposed to. They kept me sane! lol.
Questions?
So looking back on my blog I've noticed a lot of talk about Elena but not so much about her blindness or the early stages of raising her. This blog is supposed to be not only about Elena, but also her blindness so I guess I'm looking for any questions from anyone about raising a child with Optic Nerve Hypoplasia or any kind of blindness really. I have so much stuff in my head it's hard to know where to start. So please, any and all questions you have, just let me know!
Wednesday, June 15, 2011
New Park
Elena and I went on a walk today and had a pleasant discovery. About 2 streets over is a great little park. It has several small slides which is perfect for Elena. There's almost no one there so I don't have to worry about her getting trampled. And no waiting in line for the swings. Most of the playground is shaded and there's even a drinking fountain. That's the first park in a while that I've seen a drinking fountain. Elena hasn't gotten the hang of drinking from one though. At least she enjoys playing in it. :)
I met a nice woman who was there with her husband and son. Her son is only 2 weeks older than Elena. She said they go to that park all the time. I hope I run into her again. It was nice to have an adult conversation. I love Elena to death but she's terrible at conversations. lol I'm so glad the weather is finally warm. There are many park days ahead!
Sunday, June 5, 2011
Playing Catch!
My baby girl has learned to catch a ball! About a month ago, the weather took a break from winter long enough that we could go outside for a bit. After about 15-20 minutes of practice, Elena caught the ball! I couldn't believe it. I had her stand up and told her to put her arms out. I took her arms and showed her how to hold them. She kept putting them down so it took awhile to get her to hold them out. She does pretty good at throwing the ball but sometimes throws it behind her.
Elena already knows how to roll and catch the ball while sitting down so the concept was already there. When we play, I either say "One, two, three..." then roll the ball or say "Ready, set, go..." and roll the ball. She loves having me count in English and Spanish. I have her say it too when she rolls or throws it back to me. I encourage her by saying "yay", clapping and making a big deal. I'll say "You caught the ball!"
After she learned to catch the ball standing up, she got so excited and stomped her feet and shouted yay. It was very cute. When the ball hit her face (don't worry, it's soft rubber and full of air), she grabbed it and said "I caught the ball with my face!" It was so cute. She kept doing that with every body part it touched. "I caught the ball with my ear....with my tummy...with my arms...with my nose...with my eyes." Now all she wants to do it play catch. Crossing my fingers these storms stop coming through and it will actually feel like summer.
Side Note
To anyone who is reading this, if you have any braille books that you don't want anymore or even any regular books (preferably children's) that are in good shape but don't want PLEASE send them to me. Email me at imcollegebound2006@hotmail.com and I will send you my address. Put "braille books" in the subject line. Thanks in advance!
Friday, May 13, 2011
Transition
Today Elena had her transition meeting. This meeting is were I meet with district preschool people and talk about her starting preschool. They talked about services she'll get like braille help and O&M. Since she's already getting most of the services they talked about, not a lot will change. We'll have another meeting once she starts school and make goals for her.
I'm excited for her to start preschool but don't think she's ready yet. She won't be 3 until the end of August so she has some time. I'm sure her dad will want to start her in August but I think we should wait until around January. Since it's preschool, they don't care when we start her as long as she's 3 so if we think she's not ready we can wait. We'll see what happens.
I'm excited for her to start preschool but don't think she's ready yet. She won't be 3 until the end of August so she has some time. I'm sure her dad will want to start her in August but I think we should wait until around January. Since it's preschool, they don't care when we start her as long as she's 3 so if we think she's not ready we can wait. We'll see what happens.
Friday, May 6, 2011
Sunny days are here!
Winter has taken a short break and now it's starting to feel like it's supposed to, Spring. Elena and I have been going to a local park and she loves it. Well, she loves the swing. :) There is a duck pond, tulip garden, playground and swings. All she cares about is the swing! lol. She'll do the slide a few times but as soon as she hears someone say "swing" it's all over. She needs the swing NOW or there will be a tantrum. She's always loved the swing, even when she was a baby. When she was a baby, her swing was sometimes the only thing that would make her happy. I don't know why she likes it so much. I'd think that, being blind, she'd be afraid of moving that way while not being able to see what's around her. No matter the reason, she loves it and laughs and sings the whole time. What a cutie. I can't wait for more sunny days at the park.
Wednesday, April 6, 2011
Making Brownies
I discovered something that's very good for Elena but not so good for my waistline. lol. Elena loves to help me bake! I've been trying to get Elena more involved in what I'm doing around the house. She loved it. It made a HUGE mess but it was fun and she still asks me to make more brownies.
Monday, March 14, 2011
Light Therapy
This is for anyone who's child has some sight. Elena's eye doctor told me about light therapy which one of his colleagues does. One of his patients was a blind women in her 50's. She had a tiny amount of sight. Everyday for 30-60 minutes he had her hold a flashing light right next to her eyes. Every 10 minutes or so she'd switch which eye she held the light in front of. After months of this, she began to gain some sight. She now sees some light.The doctor told me about the first time she went outside, after gaining some sight. She got scared because she'd never seen the sun before. She had never seen light. Her vision is nowhere near normal but some sight is better than no sight.
The thinking behind this is that by constantly having that light near the eyes it kind of re-teaches the optic part of the brain how to see. I don't know if this works with every blind person or just those with Optic Nerve Hypoplasia (like Elena) but it's probably worth a try.
The thinking behind this is that by constantly having that light near the eyes it kind of re-teaches the optic part of the brain how to see. I don't know if this works with every blind person or just those with Optic Nerve Hypoplasia (like Elena) but it's probably worth a try.
Friday, March 11, 2011
Getting 'em Moving
I got a comment asking about Elena's physical delays when she was little (rolling over, sitting up, etc) so I thought making a new blog entry would be better than writing a really long comment back. So....lets get moving!
Elena started seeing a physical therapist around 6 months old because of her delays. The therapist said that she could physically roll over but was scared to do so. Imagine if you couldn't see what was next to you. Would you want to roll over? You could be rolling off the face of the Earth for all you know! The therapist,Ben, (who's amazing by the way, in case you live in Utah) told me some exercises to do with her at home. It's basically making her roll a lot so she'll get used to it.
One of the exercises he had her lay down either on her back or stomach. I took one arm and put it straight up by the head, against the ear. Then roll. Make sure to tell him/her everything you are doing. ("I'm lifting your arm." "Time to roll over" etc) Verbally encouraging him/her will make him/her want to do it again. You might feel awkward, I did, but make a really big fuss about it. Clap your hands, say "YAY!", tickle the tummy, make a funny rolling song etc. Whatever your baby likes and sees as positive. For me, clapping and shouting Yay usually works for me. I'm currently potty training and she goes nuts when I clap and shout. She even has a potty song that we only sing when she goes potty. She loves music so this is great for her. I don't have to use treats or gifts as encouragement. As always, though, every child is different so just find what works for you. Ben had me do another exercise that was similar but I can't remember it.
Sitting up: To help her strengthen her stomach muscles for sitting, I bought a nursing pillow that had a strap on it that would allow her to partially sit up without sliding down. It worked ok. She didn't like it very much. There was also a couple exercises Ben gave me to help her learn to sit up. As with most of this stuff, a lot is just practice, practice, practice. I can't remember all of the exercises but I do remember he said to teach her to put her weight on her elbow and then hand while sitting up. Ask a pediatric physical therapist in your area and he can help. I wish I was more help. Medicaid pays for physical therapy as long as you have the therapist write that it's medically necessary.
For standing, while holding something, it's a good time for play. Sit on the floor or couch and have her hold your knees. Sing songs, move her hips with your hands, talk, read books. This is also a good thing to teach her/him to stand without holding anything. Just have her hold toys or books while reading and standing. Sing and have her clap. This helps them gain confidence and you are right there to hold if they get nervous. Eventually, you can gradually step back a little so that he/she has to step forward to get the toy, book, etc.
Elena was delayed by at least 3 months (often more) in all her physical milestones. Mentally she seems to be about 6 months behind, in most things. She didn't start walking independently until about 2 months after her second birthday. A lot of how quickly they get the hang of walking, sitting, etc has to do with how often you practice. As soon as Elena could walk, while holding hands, we would go on almost daily walks.
SO....to summarize what I spent a looong blog to say... practice, practice, practice. Hope that helped. :)
Elena started seeing a physical therapist around 6 months old because of her delays. The therapist said that she could physically roll over but was scared to do so. Imagine if you couldn't see what was next to you. Would you want to roll over? You could be rolling off the face of the Earth for all you know! The therapist,Ben, (who's amazing by the way, in case you live in Utah) told me some exercises to do with her at home. It's basically making her roll a lot so she'll get used to it.
One of the exercises he had her lay down either on her back or stomach. I took one arm and put it straight up by the head, against the ear. Then roll. Make sure to tell him/her everything you are doing. ("I'm lifting your arm." "Time to roll over" etc) Verbally encouraging him/her will make him/her want to do it again. You might feel awkward, I did, but make a really big fuss about it. Clap your hands, say "YAY!", tickle the tummy, make a funny rolling song etc. Whatever your baby likes and sees as positive. For me, clapping and shouting Yay usually works for me. I'm currently potty training and she goes nuts when I clap and shout. She even has a potty song that we only sing when she goes potty. She loves music so this is great for her. I don't have to use treats or gifts as encouragement. As always, though, every child is different so just find what works for you. Ben had me do another exercise that was similar but I can't remember it.
Sitting up: To help her strengthen her stomach muscles for sitting, I bought a nursing pillow that had a strap on it that would allow her to partially sit up without sliding down. It worked ok. She didn't like it very much. There was also a couple exercises Ben gave me to help her learn to sit up. As with most of this stuff, a lot is just practice, practice, practice. I can't remember all of the exercises but I do remember he said to teach her to put her weight on her elbow and then hand while sitting up. Ask a pediatric physical therapist in your area and he can help. I wish I was more help. Medicaid pays for physical therapy as long as you have the therapist write that it's medically necessary.
For standing, while holding something, it's a good time for play. Sit on the floor or couch and have her hold your knees. Sing songs, move her hips with your hands, talk, read books. This is also a good thing to teach her/him to stand without holding anything. Just have her hold toys or books while reading and standing. Sing and have her clap. This helps them gain confidence and you are right there to hold if they get nervous. Eventually, you can gradually step back a little so that he/she has to step forward to get the toy, book, etc.
Elena was delayed by at least 3 months (often more) in all her physical milestones. Mentally she seems to be about 6 months behind, in most things. She didn't start walking independently until about 2 months after her second birthday. A lot of how quickly they get the hang of walking, sitting, etc has to do with how often you practice. As soon as Elena could walk, while holding hands, we would go on almost daily walks.
SO....to summarize what I spent a looong blog to say... practice, practice, practice. Hope that helped. :)
Thursday, March 10, 2011
Hello Again
So life has been insane lately. I am going through a divorce which has taken a lot of my time and obviously not put me in the mood to write. Plus school is keeping me busy. Just trying to focus on Elena right now. Elena is two and a half now and amazes me every day. I still find it hard to believe that's it's been that long already. She is growing so fast and doing so many wonderful things.
Her biggest accomplishment has got to be to be that she started walking. It happened right around Halloween.
I was so excited. All the therapists and parents were right, she just decided to start walking, just like that. I couldn't believe my eyes! I have some video on my phone that I will post if I ever figure out how to get it off the phone. She now loves going on walks and going up and down stairs. She goes through little phases of wanting to hold my hand while walking and not wanting to hold my hand. Elena has also started standing by herself without support. It's so cool to see. She's also going through phases, though, of not wanting to. I guess that's just how kids are. She's started talking a lot more and I wonder now if she even needs a speech therapist anymore. She's FINALLY pronouncing her P's, B's and sometimes her M's. It's so cute to little to her talk. You can understand most of what she says and she says it with that cute baby voice that makes you just laugh. Can you tell I like how she talks? lol. She sounds more and more grown up every day.
Subscribe to:
Posts (Atom)