Sunday, May 31, 2009

Last Week of May

Well, I've gone from feeling blech to throwing up morning, noon, and night. Lovely. I was sick like this with my oldest, but I don't remember the middle two being so bad. I had to tell the speech therapist no more 9 am sessions. I would love to take a month off, but I would feel to guilty if I did that to Goldie. Then again, she seems burnt out herself some days.

On Wednesday the big girls had dentist appointments. (No cavities!) While we were there I mentioned that the DS Center suggested Goldie start being seen by a dentist. They suggested letting her take a ride in the chair and not upsetting her by trying to actually clean her teeth. So she had a good time sitting in the chair and playing with all the tools they use. The hygenist was great and really talked to Goldie just like she would any 2 year old. She has an appointment to go back in 6+ months with her sisters. Since I wasn't expecting them to actually look at Goldie's teeth, I didn't bring my camera.

On the sleeping front, things continue to improve. In the last week, Goldie has slept through the night, 4 times. I still wake up now and then and I've seen Goldie sitting up in her sleep a couple times. So, I think she is still waking up, but is having an easier time falling back to sleep. I scheduled her sleep study this week. I asked to wait until July, hoping I will feel better. I can't imagine taking her if I am still throwing up this much.

I'm off to sew Girl Scout patches, tomorrow's the big picnic!

Monday, May 25, 2009

Must be the pajamas

I woke up at 5:45 to the sun trying to peek through the clothes-pinned curtains and I realized Goldie hadn't made a peep ALL NIGHT. I checked to see if she was still breathing. Twice.

Then I spent 15 minutes trying to figure out what I did "right" the day before. The only thing I could come up with was I brought Goldie's summer clothes down from the attic, so she was wearing her "new" summer pajamas. I felt bad, her skin was cold when she woke up because she won't keep a blanket on.

She finally woke up at 6. We cuddled and went back to sleep until 8:30!

Trying to get the camera.

"Mom, no more pictures!"

Saturday, May 23, 2009

Goldie, sleep, ENT

The morning sickness has left me feeling blech all morning and most of the day. Never the less, we managed to plant the rest of the garden and move the peeps into the chicken coop this week. We've had some great weather.

I usually blog at night after Goldie goes to sleep. That isn't working so well anymore. I'm ready for bed shortly after she is and I've really been trying to get her into a better nighttime routine. I bought her a sound machine (I love the rain setting) and we've been using melatonin before bed and once during the night. This has helped her sleep for 4 hours straight, until 1:30 and then she gets up 1/2 as much from then on. The sound machine has helped her with putting herself back to sleep. So has keeping the room very dark.

It was easy to find research showing that children with learning disabilities have trouble sleeping and visually impaired children have an even greater rate of sleep disturbances. However, there doesn't seem to be any research on why, except for children with visual impairments. A child with a VI may not see enough light to regulate their sleep cycles. At first I thought this could be Goldie's problem, but she wakes up as soon as the sun peeks over the horizon. Sometimes sooner. Like 4 am. We call her "The Rooster". Or maybe she actually hears our rooster crowing at that hour. Hmmm. Anyway, after reading this article and doing some more research we decided to go ahead and try the melatonin. I bought her a liquid so we could find the smallest effective dose. She is no longer waking every 45 minutes and does appear more rested, but we still have some more work to do.

I took her to the ENT this week. He said she would benefit from a sleep study and that even if it is negative for sleep apnea it would help us to have that ruled out. He also ordered a swallow study. I brought every single cup we've tried teaching her to drink from just to be sure I didn't get blown off. He is positive she is aspirating and that is why she doesn't want to drink anything. He didn't know why she doesn't seem to be aspirating when she nurses. She certainly doesn't have an aversion to that! LOL! I'm guessing it has to do with positioning.

Goldie's OT is on maternity leave so she has someone new for the next 3 months. I really like her, too. It's been nice to have a fresh set of eyes watching Goldie and offering new suggestions. I kinda feel bad because Goldie seems to like her much more than the regular OT. She is very laid back and just "plays" with Goldie. I don't think Goldie has even realized that she is a therapist, yet.

Sunday, May 17, 2009

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.

Saturday, May 16, 2009

Tired, cranky, aggitated

That's how I feel lately. I'm annoyed with pretty much everyone and everything. I think it stems from 1st trimester tiredness and a 2yo who won't sleep. I swear if I could even get a decent nap I'd be a new person.

One of the things that hacked me off this week was our visit to the DS Center. I was left with instructions to give Goldie cow's milk, let her cry it out, and a prescription for Miralax. Oh yeah, I almost forgot the flushot. Because a hurriedly manufactured vaccine has to be soo much better for her immune system than breastmilk! Not. I got the kids with DS have weak immune systems lecture. Yeah, well noone told Goldie that and I really don't want her to know because she hasn't been sick in 4 months and has only had antibiotics twice. And I didn't ask for advice on weaning or nutrition so I don't know why he felt compelled to suggest cow's milk. I did ask for information on how Down syndrome could be affecting Goldie's sleep. After the CIO speech I explained that it would be cruel to let a child CIO ever without first looking for a medical reason for nightwaking! He went as far as to ask why I made an appointment with an ENT. The reason should have been obvious, to have her adenoids looked at and talk about sleep apnea. The bottom line is he just doesn't have enough knowledge or experience when it comes to Down syndrome. The suggestions he gave me I could have gotten from any general practice pediatrician.

If you've made it this far, thanks for reading my rant. The other think that struck me when we when we walked into the reception area were the bulletin boards plastered with research study opportunities for Autism. I think this is great, Autism affects a lot of kids. But, there was nothing for DS. (The NIH just doubled the amount of research funding going to our Children's Hospital. I asked and No none of it will go to the DS center) Then, when I suggested checking for vitamin or mineral deficiencies when writing up Goldie's bloodwork I got a big no. "There's no reason to do that" I left with the overall impression that because Goldie has DS I'm supposed to accept its effects on her and not try to find other causes or solutions. Well, that's not my style. So I've been looking for my own answers. I've found a lot of good info on sleep that I'll post about later.

Sunday, May 10, 2009

Just a Mom

We have a little grocery store near our house, they sell all kinds of plants outside and fresh produce inside. They also carry a great selection of locally made goods. Its been 2 years since they moved "out here" and I still love the convenience. I stop at least once a week for fruit, veggies, and sandwich fixins.

Saturday was a very busy day. It took longer than usual to do our shopping, but that was because I got sidetracked talking to the man selling fudge. Turns out he grew up on the same street as my dad.

Goldie was sitting in the cart whil I tried to get us out of the store, past all the people looking at plants. I stopped to wait for another cart to move. That's when a woman, maybe a little younger than me, came towards me and said "My daughter has..."

Now in a split second my head finished the sentance with "Down syndrome, too."

But what she finished saying was "My daughter has the same outfit."

Me: "Oh, yeah. We love it, she's growing out of it, so I try to put it on her as much as I can."

She looked at Goldie and we continued to chat about clothes and how busy the store was. It was a very quick conversation. She never asked how old Goldie is, is she walking, is she talking, or any of the other questions I get so often when people think something isn't "right". For once, I was just a mom, who likes pink and brown, who has 3 girls, who needed food for lunches, and forgot to buy milk.

Happy Mother's Day!!

Saturday, May 9, 2009

"High Functioning" and why I don't like it

I've been meaning to write about this, so after reading Megan's post I thought now would be a good time.

Following Goldie's birth, we heard a lot of comments like, "maybe she just has a mild case of DS" or "maybe it won't be too bad" or "she doesn't have all the physical feature so it must not be as serious". I don't like hearing these things, but I usually assume that people mean well and I explain that DS doesn't come in varrying degrees. Every child has their own strengths and abilities.

When Goldie was around 6 or 7 months, I was really worried. Laying awake at night,crying worried. I really thought she was blind and hearing impaired. She couldn't see further than 3 feet away and she wasn't turning toward sounds. I held her all the time because I didn't want her to think she was alone. Having her pictures taken was gut wrenching because she had no idea where the person with the camera was. No amount of singing, clapping or toy waving registered any response. Her eyes would search all over the room for...something.

It was during this time that this person stopped to drop off some things she had bought for the girls. Now, I don't want to air our family's dirty laundry in public, but let me say that this an immediate family member who sees Goldie at least twice a week. She aked how Goldie's therapies were going and then she said "Well, I'm sure she'll be fine. She's high functioning. You can just tell she's high functioning."

What I heard was "I hope she's high functioning because her life will have more value and I don't know if I can love her if she's not."

I didn't know what to say, so I nodded like a bobble head while opening the door for her.

What I really wanted to say was "Are you effing kidding me? My kid can't even see you from four feet away. If you spent more than 5 minutes with her you would know all the things she can't do. I don't care if she's high functioning. I love her anyway. I have a love for her that others will never know." I know part of that sounds really negative, but I was very aware that she wasn't doing most of the things her sisters did at the same age. As Goldie's mom I've learned to walk a fine line between reality and high expecatations while always trying to stay positive and optomistic for her future.

While working on our presentation last month, my friend Sarah, sent me a link to Disability is Natural with information on people first language. Then this week she forwarded a copy of this article. I enjoyed reading this because she brings up many thoughts and feelings I've had over the last 2 years.

I'm overjoyed by the progress Goldie has made. We've been told she is still legally blind, but I'm amazed everyday by what she CAN see now! She hears everything. We even have to spell in front of her. (Don't say popcorn unless you plan on making it!) But, I still see people trying to size her up or compare her abilities to others. I've also seen the pity when they ask if she is doing something and I say no. I know they feel more sorry for Goldie or me than we will ever feel for ourselves.

Thursday, May 7, 2009

Blood work do-over

When I took Goldie for her 2 year check-up, I made sure to get a script for her bloodwork. I asked for thyroid and CBC. We go to the Children's Hospital satellite because they are the only people I trust to stick my baby. Her arms are very chubby and they have to go by FEEL because you can't SEE the vein. Well, Goldie was awesome, but it took a loooong time to fill the tubes. I had a bad feeling about that. The next week I called to get the results and they told me her blood had clotted before it got to the lab,so we have to do it all over again. I hate checking something off my to-do list only to have it added back on. And they billed our insurance for it.

Instead of going back to the ped. for another script, I decided to wait until next week when we go the DS clinic and have them write up the order. I'm going to ask them to add the Celiac panel and zinc. Anything else? What do you check you kid's for?

Sunday, May 3, 2009

New Life

I've been marveling at the new life spring has brought to our home and property this year. Goldie's tulips bloomed again. They weren't as eye catching as the first year, but I still enjoyed them.

Hank bought me blackberry, raspberry, and blueberry bushes for Easter. We planted them where the chicken coop was last year. The soil there should be nice and fertile.

The asparagus I planted last year is coming up! I love asparagus and now we will be able to eat it from our own garden! Hank was laughing at how excited I got over seeing the first skinny shoots.

Two weeks ago I planted half of the garden. (The half Hank didn't dump clumps of cow manure on.) I planted lettuce, cabbage, onions, and sugar snap peas. They will all do well if we get another frost. I'll plant more after Mother's Day.

We surprised everyone with the news this week that Goldie is going to be a big sister! It looks like the girls will be getting a new sibling for Christmas. I couldn't have planned that if I tried. Not that we were trying or planning. I admit to crying a few frightened tears. Goldie is still nursing a lot and doesn't sleep for sh*** at night. Because of Hank's work I'm on my own when it comes to nighttime parenting. (It just wouldn't be good to have a sleep deprived, gasoline tanker truck driver cruising the roads.) So, this means I have to get my act together and figure out how to help her sleep better on her own. We have an ENT appointment this month and plans to rearrange the girl's bedrooms. Any gentle parenting ideas are welcome. (We don't CIO.)

The girls are excited. They are hoping for a brother. I explained that I don't think those odds are very good. I'm so happy that Goldie will have a sibling close in age to her. Out of all 4 children, these 2 will be closest in age. Most of our friends and family are happy for us. But, there's always that one person who has to see the dark side of everything. It's a shame, really. I'm looking forward to seeing our family grow. I grew up with only 2 cousins that live 600 miles away. I always wished for a bigger family, especially around the holidays. I missed having kids to draw, sing, or play dolls with. As an adult,that has become my wish for my kids. We can't give them cousins, but we can give them each other. I just hope that whatever life brings their way, our children are able to go through it together.