More Occupational Therapy @ Home

I'm always looking for ways to foster skills Goldie is working on, yet are FUN for her and her siblings. Goldie has fine motor delays caused by her low muscle tone and her low vision. The hypotonia and nystagmus are always collaborating on ways to trash her eye hand coordination. It's our job to help Goldie get one up on them.

In the March/April 2010 edition of Mothering magazine I read Shannon M. Medisky's fabulous article, "Your Indoor Playground" about creating indoor playspaces. Namely, vertical ones to save space. One, in particular, caught my eye. It was a standing lacing board.

I pitched the idea to my husband thinking he would be annoyed by the addition of one more thing to his honey-do list. Nah. He said it would be no big deal. He picked up the supplies for $6.42 and had it put together in about 20 minutes. It's nice and big so 2 or more kids can play at one time.

Goldie's OT has suggested using pipe cleaner with lacing activities instead of the typical laces. Goldie isn't sold on this idea. She sees her sisters using the string and that's what she wants. I play a game with her by standing on the opposite side of the board. We take turn pushing and pulling the large thread through the holes. For my older kids, they can use longer ribbon to make designs. (if their mother would dig it out of the craft cupboard for them)

I know not everyone wants something like this taking space in their living quarters. We've decided its part of the trade-off because we aren't sending Goldie to preschool. That means its our resposibility to provide educational and engaging activities for her.

If you'd like to read the article send me an email, then I can send you a digital copy of it!

And if you're looking for more OT @ home try here.

Updates and an Ultrasound

We had a week of good news!

First, Goldie saw the pediatric opthalmologist and it looks like she isn't going to need surgery anytime soon. Her nystagmus continues to improve. In Dr. H's words "sometimes nature does as good a job as I can do with surgery." There is another procedure that can be done to center her null point, but hers continues to move so that will also have to wait.

Then we talked to neurosurgeon. Goldie's numbers from her c-spine xray were in the normal range and she doesn't need to have any restrictions. She said Goldie can be just as active as any other kid her age. The Dr. does want to follow up with us yearly for the next two years to see if things move and get worse or better. Now, we have the all clear to get her tonsils and adenoids out.

Last, but not least, I went for my ultrasound. The baby is measuring a week smaller than my dates, so I may get another week to prepare! The dates could be off because of breastfeeding and not having regular cycles. So, here's were things got weird. The very nice lady doing my ultrasound went to talk to the Dr. about the measurements.(FYI - This is not my Dr. I wasn't expecting to see a Dr. I am being cared for by a group of midwives.) She comes back in the room and explains to us that because we have a child with Down syndrome the doctor wants us to speak to a Genetic Counselor. Right now. He will not see us unless we do. She told him we were declining genetic testing. He still wanted us to talk to someone from genetics.

I feel like I should explain our decision. When I was pg with Goldie I had the quad screen, a level II ultrasound at 17 weeks and another u/s at 36 weeks. I wanted to be prepared if my baby was going to have feeding difficulties or require a hospital stay. We also had other children that would have to be taken care of if I was at the hospital with the baby longer than expected. However, God had other plans. All of the screenings came back as normal and we were totally suprised when told that Goldie may have DS. So, I have very little faith in their ability to diagnose prenatally. I have been told by a genetic counselor that we are among the 5% who have the screenings where nothing shows up. Hank and I have also come to terms with the fact that any time you choose to become a parent you are accepting the risks that come with it. Just as there is a chance that a baby can be born with health complications, there is also the possibility that our older children can develop health problems or get hurt in an accident. You can't "test" your way out of life's rough spots.

Back in the room, Goldie is climbing the wallsand my 7 year old is writhing in her chair. It had been a long morning consisting of wrong directions (twice) and the long ultrasound with a stubborn baby curled in a ball. We were done. They got pictures of everything they needed and I'm sure if something doesn't look "right" we'll get a phone call, so we left.

But, not before we found out we're having a BOY!

Cha-Ching!

Just a short post to brag on my little girl! Today, during Vision Therapy, Goldie put coins into a piggy bank. Real pennies, dimes and nickels into her sister's piggy bank. Wow, we were blown away! She was even able to find the coins on our beige, brown, green carpet. I'm starting to think she may not qualify for the diagnosis of legally blind anymore!


I'm off to make raspberry jam. I'll be back later with a post about Goldie's sleep study this week, with pictures. :)

Vision Evaluation

This week the director of the Toddler Program at the Western PA School for Blind Children came to do a vision eval on Goldie. She was here for almost 2 hours! Goldie and I were so wiped out afterward that we had to cancel speech that afternoon.

The eval confirmed some of what I knew, but taught me a lot that I didn't know. I knew her peripheral vision was low. She was able to tell me specifically that it takes Goldie a long time to see movement with her peripheral vision, but she picks up light faster. So, a dr using a light to test her wouldn't get truly accurate results.

I asked about how we can help Goldie become more interested in her toys. Her answer was basically that we are going to have to think out of the box and adapt her toys ourselves. Using a black marker to outline pictures in books or painting the pop-up figures on her toys so that they are more visually appealing to her were some suggestions. I have to admit after I heard her ideas I thought to myself "Oh, yeah. That is so obvious. Duh."

She left me a folder packed with information on Goldie's diagnosis and how we can adapt her environment to help her. I tried to link to the program in another post, but the next day they changed their website and now the page is gone. The new site doesn't even mention the Toddler Program, but I can tell you it is a free service for children living in Western PA with visual impairments. When school resumes in the fall they will send a team of therapists to do a more comprehensive evaluation.

Next on the agenda

I scheduled an evaluation for Goldie to see if she qualifies for this program. I should have done it last year, but I didn't know how to fit anything more into our schedule. I'm still not sure how it will all work out. I just know we need some new ideas and suggestions on how to get Goldie to actually play with her toys for more than 2 seconds. ANd I would love to have some idea as to what she can actually see. We went to the zoo for Mother's Day and I think the only animals Goldie saw were the fish in the aquarium and maybe an elephant. I kept telling her to "look" and turning her head and pointing. I'm not sure she even understands what it means to "look" for something. I know she can indentify what the animals are because we read books at home and she can match some of her toy animals to the pictures in her books. Ah well, maybe next year.

What do you want for breakfast?

I put Goldie in her chair for breakfast and asked what she wanted. I wasn't sure what I had to give her. We were out of her waffles and bananas. So I look over and she is doing her sign for popcorn and she says "pop". I was so excited! Now here is the part where I feel like crap. We had to leave for Kindermusik and I did not have time to make popcorn. She accepted cereal instead. When it was gone she signed more and said "mo".

The Vision Therapist came today and I filled her in on the new dr. While I was telling her about Goldie signing at breakfast she signed eat and said "eeeah".

This is big because when she started walking she stopped signing and talking. Its nice to see her words coming back. I think her low vision has also affected her ability to learn sign. She can't see movement well, so I don't know what our signs look like to her. We're going to start using picture cards as another communication tool.

Lisa left a comment asking about the treatment for Goldie's nystagmus. It will most likely be surgery. There is a procedure to move the null point and a tenotomy to lessen the jerking. After surgery, she will need more vision therapy to learn to use her new vision.

Nystagmus

Thank you to everyone who read Goldie's long birth story. I'll try not to leave you hanging much longer. But, I just had to post about today!

Goldie was diagnosed with Nystagmus when she was about 4 months old. Basically, her eyes jerk back and forth and she is unable to focus on anything. Even though the DS "caused" her nystagmus, I feel like the nystagmus has affected Goldie's development more than the DS. It has improved tremendously since she was an infant, but it is always there.

I took her to an ophthalmologist at 4mo, 6mo, and 1 year. She has also had Vision Therapy for the last 14 months. At Goldie's 1 year appointment I had some specific questions about her vision that they were unable or unwilling to answer. I felt that her diagnosis of nystagmus was being trivialized. At one point, the doctor told me "most babies are legally blind anyway". Um, no, not at 12 months. I was told there was no treatment.

I'm basically skeptical of doctors anyway, so I decided to get a second opinion. After months of research and talking to Goldie's VT I made an appoint with a doctor at our children's hospital. He specializes in nystagmus. I don't know why we weren't referred to him sooner, but that's ok.

We saw him today. He gave us what every parent wants, hope. I learned more about Goldie's vision from this doctor in 5 minutes than I have in the last 2 years. He picked up on ways she was compensating that no one had noticed. He explained how treatment will help Goldie and that she is at the perfect age. Seeing him sooner wouldn't have changed anything because children respond better to treatment after they are walking. He said most children with nystagmus are left untreated even the surgery is very similar to the ones used to correct strabismus. Some of the things I learned made me sad. Her vision has probably been much worse than we were led to believe. I've known there was a lot she couldn't see, but I wanted to believe that it wasn't as bad as I thought.

We left with a large book written by one of his adult patients. I started reading it on our way home and already have a list of questions started for when we see him again in 3 months. The woman who wrote the book is from California. She was unable to find anyone to help her, so she flew across the country to meet this dr. I can't tell you how blessed we feel to have him in our "backyard".

One got glasses and one had a birthday!

Swatcho got glasses last week.








This baby turned 10!



She wanted to celebrate by going to see the horse exhibit at the museum and having stuffed grape leaves for dinner.





We rolled out 70 of those sought after, sour creations. Well, the Birthday girl didn't start rolling until the end was in sight and there's no pic of the finished meal because we ate them. Quickly. Goldie has eaten them before, but wasn't in the mood this time.

Goldie has a Birthday and an eye Dr. appt this week. This is with a new doc and I'm hoping he can answer some questions we've had about Goldie's vision and nystagmus.


This is her after the museum. Yes, she is still rear facing. Her sisters are way more entertaining than the back of my head. Plus, I'm clinging to every last morsel of her babyhood.

Another Point of View

After reading Lisa's post at Finnian's Journey, I wanted to share a story.

Mini Me celebrated her 8th birthday just days before Goldie was born. We've talked about how babies are made and she had a basic understanding of genes. Like she has my brown eyes and her sister has her dad's blue eyes. I was sorting throught a pile of dirty dishes while she sat across from me at the bar. She asked me if her children would have Down syndrome. I immediately began to reassure her. "No honey, they probably won't. Goldie's Down syndrome is not hereditary. It just happens some times. Only 1 in 800 babies has it."



Her reply: "Well, I can always adopt a baby with Down syndrome, right?"



At that moment I felt like she was raising me.






I just have to add, my SIL took this picture. It is such a fluke. Goldie was 8 wks old and wasn't able to maintain eye contact or focus on anything. (She has nystagmus) So, this is the only picture from that time where she is actually looking at the camera.