Hospitals :(

Friday we went to the Children’s Hospital in Oakland to see an endocrinologist (hormone doctor). We had to skip school to make the appointment, but I feel it was worth it, because we need to make sure everything is going right inside that cute tiny body.  People with ONH usually have hormone problems along with vision impairment.  Most often it’s growth, cortisol, and thyroid. Yay…. 

Before we even see the doctor they take her blood pressure.  Apparently having her appendages squeezed is one of the worst experiences known to man.  They’ve tried to take it the last two times she’s been to the doctor. This time, same as last time, she screamed like they were pulling off her fingernails until they stopped, with no reading of course. Completely wasted effort that has just managed to put her on edge. So when they tried to take her height, she decided she didn’t want to lay down. *rolls eyes* What am I supposed to do? We proceeded to pin her down to the table and stretch her out to her full height.

The doctor told me that since she’s still growing in height, albeit slowly, and just barely growing in weight, it is more likely that she just isn’t getting enough calories.  With our picky little eater, this is hardly a surprise.  We’re being referred to a Nutritionist, who is going to tell me to make her eat more food. DUH! I know that already.  I’m just hoping they can help me find ways to do that.  Maggie eats what she wants, when she wants. 

Exhibit A: She likes apples. Some days she’ll eat two whole apples.  Most days she just screeches, “NIIII!!” (For unknown reasons, no has become ni lately, which I don’t get because the kid speaks in full sentences. My guess is because it causes that much more pain to my ears when its high pitched and right in my ear.)  Then she proceeds to eat chips. or crackers, or dry cereal or whatever other small similar snack food we can sneak past her lips.

Introducing a new food is next to impossible, unless it’s a new type of cracker.  She eats nothing but apple sauce off a spoon, so nothing gooey, sticky, wet, or gross in any way.  She drinks milk. All the time. She’s still on whole milk and we add Nesquik to get her as many calories as we can. She does like smoothies, so she’s getting some spinach and carrots and lots of fruits.  She’ll eat fruits on their own though.  Oh, and bacon. So she does get some protein. Other than that, I’m out of ideas. Anyone? Please?

Back to the Hospital experience…Turns out cortisol comes and goes in waves over the course of the day. So testing it at a random time during the day, we’re not going to know if it’s because it’s at a low point in its cycle, or if she’s got low levels.  We came back the next morning as soon as she woke up, when cortisol is supposed to be high, which turned out to be 6:30am. Yay!! (Feel the sarcasm radiating off that little word?)

They gave me a funky bag your supposed to put in their diaper to collect urine, she hated it, so we sat her on the potty for a bit.  A friend said kids usually go pee within the first 20 minutes of waking, so I figured this was the best chance to get some. 5 minutes of sitting on the floor next to her, singing some potty songs we’ve made up, SHE PEED!! That’s right! We got some pee in the cute little potty, which also meant she didn’t have to have a plastic bag in her diaper. Lots of happy people in our house.

Didn’t bother to change her out of jammies since we wanted her as comfortable as possible when they started stealing her blood.  It was Saturday morning, so Brandon was able to come with us for some moral support. Turns out though only one parent can be in the room with the kid. Brandon handed her right over and left with a, “Good luck.” Sigh. It’s sweet though, that he can’t handle her hurting.

The phlebotomist showed me how to hold her down so she would be unable to wiggle out.  Now, I’m a medical assistant. I’ve done shots and IVs and taken blood from my fellow classmates, then from patients when I worked doing my internship.  I’ve even given Maggie some of her vaccine shots. It’s sad when she cries, but she stops quickly, and just complains about the bandaids until I let her peel them off.  I thought I would be fine, no problem. I was so wrong.

She got out a butterfly needle, and I thought, “Oh that’s a good idea since they’re smaller, it’ll fit into her little veins.” When Maggie wears long sleeves, she does not like the sleeves to be pulled up at all, but of course we had to pull them up to get to her vein. So before we even get the tourniquet on she’s whining and pulling on her sleeve.  Tourniquet on, and she says, “All done with the sticker.” More whining and pulling on the sleeve. I guess the rubbery band reminded her of a sticker. Then I have her in full body lock and she gets poked. Screaming like she’d just been stabbed with a needle. Oh, wait. They took NINE vials of blood!!!  I didn’t think she had any left after that! It took 2 or 3 minutes to fill all the tubes.  She just cried and cried and she can talk now, and was asking me to make it stop, but I couldn’t. AHH! Gut wrenching sadness! I wanted to make her happy, make her stop crying, but I just had to hold her tight to me, sing to her, talk to her, try and soothe her anyway I could. She liked the singing, but then I would be distracted by another tube being filled and pause in my singing, so she would start screaming and struggling again.

Oh! It was so sad! I almost cried with her. Vials filled, its time for cotton and tape to stop the bleeding. My girl does not like bandaids. I pulled her sleeve down over the tape and tried to distract her. Strawberry milk did the trick for a while, and definitely helped calm her down.  Then we got out to Daddy and she was much better.  She convinced us to take the bandage off within 5 minutes though, with her whining and pulling on her sleeve.  Her dad is such a sucker. He’ll do anything for her.  It’s adorable.

Breakfast at Jack in the Box; she got a bottle of chocolate milk, so she was a happy girl.  Even ate some granola bar.  I was still really shaken up.

I love Maggie. I hope that in two months when we finally get to hear back what the results from these test are she’ll be ok. I know we can handle whatever comes our way.  The Lord does not give us anything we can’t handle. I know we can do it. We’re a strong, happy family. Lots of love, and we want for nothing. We are so blessed.

I don’t want to be the one holding her down next time. She’s precious.

Orientation and Mobility

Maggie has an Orientation and Mobility specialist! Laurie gave Maggie her first cane in November 2011.  It becomes more fun for Maggie every time she uses it. Laurie will come to the school sometimes to work with Maggie. This last week she was there, helping her learn her way around the play ground while Laura was spending time with Ella, which I appreciated very much.

They said that when I feel comfortable I can leave Maggie there and go out for two hours by myself while she’s at school.  After last week I don’t know if I will ever reach that level of comfort.  I’m not a particularly “protective” parent. I don’t care about sharing food or drinks or eating off the ground or dirty hands or the fact that Maggie falls ALL the time. I know she’ll just get right back up again.  I’m a pretty tough Mom, as a general rule, but when the other preschool class came out I wanted to grab my little girl, hold her close and protect her from those big mean seeing children.

I know I’ll get over that eventually, but right now, I just want her to stay little and safe and always happy. It’s funny, because I make her cry all the time, telling her she can’t have something or that it’s all gone or, heaven forbid, I LOST one of her toys. It’s not heart wrenching when I make her cry, I know it will help her become a better person, learning to be more patient with me. HA. That’s not something you think about often, your children needing to learn patience with you.  We always talk about how they try our patience, but really how annoying has it got to be that they’ve asked three times already and you still haven’t gotten off the couch to get them some goldfish? Oh, sorry.  Maybe that’s just me.

I love Maggie.  I know she’ll be okay.  I’m still going to hang around at school for awhile, because she’s never really been in a situation where there wasn’t an adult to come save her from the other children.

On Sunday, I talked with her Nursery leaders about making her spend more time around the other kids. Nursery is the class for children 18 months to 3 years old in our church.  They take the kids and have a structured, scheduled two hours of class; playtime, snack time, music time, and lesson time. It provides an opportunity for the kids to learn and have structure and be social while allowing the parents time to attend Sunday School. It’s a wonderful program, and I love Maggie’s leaders.  It’s easy to just pick her up when she’s crying and keep her away from the kids who take her toys or step of her little fingers, which are always on the floor, or who, GASP! touch her in passing.  She needs to become more accustomed to being touched roughly.  Kids are not very gentle, but I don’t know how to make her be okay with that. Sigh. It’ll all work out in the end.

Maggie and Laurie had a play date at the park on Monday.  They worked with her cane, walked in the sand, played on the swing and slide, and had an all around good time.  Laurie wants Maggie to just get used to her cane, to enjoy walking with it, and to realize that it can be really helpful for her.  Duran came with Laurie as well. He’s a pet ambassador!  Duran used to work as a guide dog, but has retired, and now Laurie gets to keep him and use him as an introduction to guide dogs. He was beautiful!  I don’t know if Maggie will end up with a guide dog, but I think it would be neat. 

Maggie really does love her cane. I love that she loves it.  It’s so adorable to see such a tiny little girl walking around with a cane.

Brandon’s helping her walk around the park.

She’s keeping the tip on the ground while we sing a song about her cane.We also got the opportunity to pet our neighbors boa constrictor! He brought the snake out in the front lawn to sun. I saw him, grabbed Maggie and ran across the street. I could not pass up the opportunity for my girl to pet a snake! She liked it too! She still talks about petting Eric’s snake two days later. “I pet Eric’s snake. It was smooth and scaly. It was round and long. I pet Eric’s snake!”

This girl loves the grass, and being outside. It’s a good thing.We’ll end with banana bread.  I have tried to get her to help me bake a few months back and she had no interest.  Yesterday, however, she helped me make banana bread!  We talked about all the things as we dumped them into the bowl.  She helped me turn on the mixer, and smash the bananas.  Once it was time to put them into the oven she was definitely bored, but it kept her attention all the way til then, so I was thrilled. Then when Brandon got home, not only did he get to eat warm banana bread, he got to hear all about how it’s made from Maggie.  This girl loves her daddy.  She cries when he leaves and squeals with joy when he comes home and LOVES to spend time with him. 

“Read the ABC book with Daddy! Jump on the trampoline with Daddy! Eat some carrots with Daddy!”

“With Mommy?”

“No, with DADDY!”

“Okay…”

Of course he’s just as gaga for her.  He is the best dad in the world.  He is so patient, and loving, and tolerant.  She can be crazy sometimes, but he’ll do anything for her.  And for me. He’s just a great guy all around. I don’t brag enough.  We are really lucky girls. 

First Day of School!

Friday was Maggie’s first day of school!  There were some of the jitters for me that I think everyone assumes come with your child first leaving you.  But on a whole I was just excited.  Maggie has a new vision specialist, Laura. She’s taking the place of Sandra, and teaching the toddler level children in our area.  Sadly Maggie was not at all eager to go to school. We’ve been prepping her all week telling her how much fun it will be, then she just woke up cranky. Go figure. Pause on the porch for the obligatory first day of school picture!Whining all the way there until Laura showed her a huge bin of beans! A sensory bin, where the kids get to scoop and bury and just have fun. We have a small box of beans at home that I hide toys in for her to search through and find. It was the perfect thing to comfort her with familiarity. They spent a lot of time walking around the room and touching the different little tables and chairs and art easels and toy kitchens.  There was tower building time, when she just emptied the bin naming the shape of each block as she took it out. Then playing clean up and counting them all as she put them back in the bin. It makes a big difference if you’re playing clean up than if you are picking up your toys. One is a fun game and the other is an arduous task.Maggie was thoroughly excited with the trampoline. It is square and has a handle, where ours at home is round and I have to hold on to her.  I wonder if there is an attachable handle we can buy for our little trampoline.  It would really save my aching arms.After an hour we all took a trip to the play ground. Which she didn’t want to go to, and I realized I’d never called it a playground, it was always “the park.”  Once we’d established that they were essentially the same thing, she was thrilled. The slide, the bridge and the swing were all played on. Laurie was able to come for the last half hour and work with Maggie on some mobility.  Maggie received her first cane in November, and has taken to it like a fish to water.  She loves walking around with it, and singing the many songs Laurie has taught us about the proper use of and terminology for the cane.By the end Maggie really felt comfortable and I think she had a good time. She’s been talking about the things she did at school, so that means it stuck out in her mind. Yay! Thank you Laura and Laurie! I think she’ll do well next week when Ella comes to class as well. We’re excited to meet a new friend.

Once upon a time…

Well, I have to start some time.  It might as well be now, as Maggie has passed out on the floor mid playing. I miss consistent naptimes. (and a quick disclaimer: I wrote this about 3 months ago, but couldn't think of a name for the blog, so never posted it. We've since moved to a new apartment, but it's still a good starting place, with the added bonus of it already being written :))

Anyway, meet Maggie:

She’s my beautiful 2 year old daughter. We have a lot of fun together. She loves to play at the park and go on walks.  If she had a choice she would have me read to her for 4 hours a day and sing with her for 3 more and all of this would be done outside interspersed with trips on the swing and slide.  She loves her daddy SO much! Going on a walk with daddy to get the mail when he comes home from work is one of her favorite activities.  They wrestle and tickle and throw balls to each other.  She talks my ear off and loves to learn.  She loves talking to her Grandmas on the phone and playing with her friends at church. She is also blind.

Maggie was born July 25 in Rexburg, Idaho.  When she was 4 months old I started to worry because she wasn’t looking straight at anything, tracking when something moved in front of her or showing any interest in light/dark/colorful things.  My husband, Brandon’s aunt Kathy is a neo-natal nurse. When we were visiting at Thanksgiving she mentioned that Maggie might be blind.  Which if course put me in an internal tornado of disbelief and denial, with a little worry and questioning thrown in. I appreciate her honesty. 

When we got back from the in-laws I took Maggie in to the doctor to get her 4 months shots and check up, and just mentioned my worries.  He referred us to an ophthalmologist, and she was quickly and easily diagnosed with Bilateral Optic Nerve Hypoplasia. In a nutshell, the optic nerves did not form all the way, so instead of her brain receiving a gushing river of information from her eyes, there is only a slow, trickle.  To learn a bit more click here.

Most of the time people with ONH have accompanying complications in the brain with their pituitary gland and corpus collosum. We took Maggie down to Primary Children’s Hospital in Salt Lake City so that she could get an MRI in December. I’m sure some of you know, but it is truly heart wrenching to withhold food from a 5 month old all morning, then help hold her down as she gets an IV so she can sleep through the 45 minute MRI of her little brain.  Turns out she’s fine! Her little brain is working beautifully, the only problems they saw were with the optic nerves.  We couldn’t believe how blessed we were. I did not relish the thought of giving her hormone shots for the rest of her life.  

We were soon able to contact the Idaho School for the Deaf and Blind and the Infant Toddler Program.  Through them Maggie was able to start occupational and developmental therapy when she was about 9 months old. They brought her new toys every week teaching her fine and gross motor skills, compensatory and cognitive, social and self-help.  She learned a lot and I think, more beneficially I learned a lot. Nancy, Marci and Melissa helped me to understand what I could be doing to help Maggie, and I am so grateful for them!  Maggie learned how to crawl, pinch, moo and find her toes. We worked with (and still do) the Oregon Project. More info here.  It has ideas and check lists of what kids should be able to do from birth to 6.

We moved to Boise for a while and were able to transfer to some different therapists, but soon moved on to Seattle, and have finally settled in the Bay Area of California.  I was so excited when I found out that one of the best schools for the blind was only 15 minutes from our new house. I called them up when moving had calmed down a little, and was greeted by the information that they do not have any programs for the kids until they are 5 years old. CRUSH! Drop the phone in disappointment and loss of hope for my 18 month old daughter who could still definitely benefit from therapy.  I’m very disappointed in myself to admit that it took a few months before I really put forth the effort and found the Blind Babies Foundation in Oakland.  They introduced me to Sandra, our current toy bringer.

Sandra is a vision specialist that works for our school district.  She visits us once a week bringing different activities and toys to teach Maggie new skills. I feel she does the most help by giving me ideas of what to do with Maggie, how to provide her with new situations and help her to learn more about a world she can’t see.  We’ve recently started taking walks with her little walker toy (borrowed from Sandra) and touching everything she runs into. Fire hydrants, fences, flowers, grass, even bumps in the sidewalk.  She loves taking her shoes off so she can feel what she’s walking on. She’s so independent, and so brave.  

We have been really blessed in the help we’ve received.  I am so grateful for my little girl.  She lights up my life like no one else can.  She is beyond precious to me and my husband.  She gives the best hugs, and she melts my heart with her little smiles.  I’m writing this as an example of what our lives are like, of ways we find to help our daughter, and of how we find happiness and beauty all around us.

Please ask me questions. If you are in a similar situation, I want to talk with you, share ideas, find out how you get your child to eat gooey, sticky or slimy foods, because Maggie will have nothing to do with them. 

We love our life, and our little darling. May you and yours find happy days.