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.

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.

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.

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.

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

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!