Where can I get an accurate swallow study done?

When I wrote that last post I was feeling the dread of dealing with the stomach flu over Easter. Well, that went away around 2 am when Goldie drank a cup of juice and kept it down. My husband decided that would be a good time to give me the whole story about what preceded the puking.  He had Goldie with him, visiting the neighbor. She had a little glass and was playing with their water cooler. Filling the glass, trying to drink from it and spilling it all over the place. For most 3 year olds this would be good, clean fun. (Unlike yesterday when she came in covered in tractor grease...) The only problem is that Goldie can't drink thin liquids without choking. Which is what happened. She choked and coughed so hard that she threw up her dinner. It took over an hour to empty her stomach because of her diastasis recti.

WARNING: This next part talks about vomit and you may think its gross.


This brought about another interesting discovery. She didn't chew her dinner. She swallowed her ham whole. The pieces were the same size I had cut them. I don't cut her food teeni tiny either. I don't know if this is a one time thing or not. She has had on OT and an SLP watch her eat. They always tell me how well she chews and moves the food around her mouth. I've given her steak cut in strips and she is able to bite pieces off and chew them. Hmm.

My biggest worry though is that she still can not drink liquids without me adding Thick-It to them. This is why I am glad she is still breastfeeding. It is the one sure way I have of getting fluids in her, even when she's sick. We had a swallow study done last year and were told that everything looked fine and she would outgrow it. Since then I've talked to other parents, whose kids have feeding tubes, and they had the same experience. Only to find later, with a scope, that their child had something physically wrong that prevented them from being able to eat and/or drink.

I know she needs another swallow study done. It annoys me that they pretty much wasted our time last year. I had it done then because I didn't want to be toting the baby along to all these appointments.  Any advice on how to get this done right?

And to make things even more fun, I need to have outpatient surgery this summer. I wish I could get it over with sooner, but we booked a vacation. The nerve of us, thinking we could get away for the first time in 5 years. Regardless, I will work very hard at relaxing,  despite all the medical loose ends waiting to be tied up.

The Never Ending Search for Sleep

Its been 3 months since Goldie had her adenoids and tonsils out. Long story short, her sleep is worse than ever.

Eight weeks post op we were supposed to have another sleep study. I politely declined. Goldie seemed to be sleeping better, even though she is still a restless sleeper. I think it may be genetics and not the trisomy 21 kind. Its very common for me to be up with Goldie and hear one, or both, of her sisters talking in their sleep. Goldie has even started saying "No! No!" in her sleep.

Then, right at the eight week mark, I noticed Goldie's breathing was really noisy when putting her to bed. It sounded like she was getting a cold. Her sisters both had colds within a couple days. Even though nothing was draining from Goldie's nose, I used the saline drops and vaporizer trying to clear her congestion. That was 4 weeks ago. Since then we have tried antibiotics, herbal supplements, more drops with suction, and two antihistimines. Her breathing is still noisy and causing her to wake up all night. I called the ped today and she wants us to try a different type of antibiotic and if it hasn't improved by Monday to call back. I told her with the baby due soon, she would be seeing us either way!

I'm not crazy about giving her more antibiotics, but I thought we should try it before we head off to the ENT. And it doesn't help that she drinks just enough to survive. If this drags on until the baby arrives, I can always hope letting her nurse more will be the cure. Any other ideas?

Goldie's Drinking Journal

Thought I would post what I have so far of the journal I'm keeping in regards to Goldie's drinking and swallowing. I definitely see a pattern emerging.

6/23/2009
Goldie took a couple sips with her chin tucked and did well. At dinner she was holding her cup and drinking with her head up. A lot of liquid came back out of her mouth and she started coughing.

6/24/2009
Goldie was not very interested in drinking today. Before bed her sister made a glass of chocolate soymilk and let Goldie try some. When we made Goldie her own cup she drank most of it with a straw. She did well drinking with her chin tucked. She sat on the living room floor and was able to hold her cup in front of her chest by herself.

6/25/2009
Not interested in drinking this morning. I think my milk supply is increasing because she was nursing a lot and had two very wet diapers.
Goldie woke up thirsty from her afternoon nap. She took a long drink of juice (chin tucked) and did well. She continued to drink well throughout the afternoon and dinner.
She was eating dinner in her highchair. I have to hold her cup off to the side so it is low enough for her to drink safely. When she held the cup herself, above the tray, she began coughing and pushed her drink at me.

Prior to the swallow study we didn't know that her chin needed to be down throughout the entire suck and swallow. I would offer her drink lower so she would have to bend down, but I wasn't making sure she held that position until she finished swallowing. I'm thinking that drinking from an open cup will be tricky until she outgrows this. Less mess for me, right?!

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.

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.

I'm speaking on Breastfeeding & Down syndrome, wanna help?

I've been consumed with a presentation I'm doing with my friend, Sarah, this weekend on Breastfeeding and Down Syndrome. We are in our final stages of preparation and I'd like to add some pictures to a Power Point presentation that she did. So, if you have any pictures of your child with DS breastfeeding that I could use, I would be soooo grateful. I can't guarantee that I'll have them added in time, but we are hoping to present this session again in other locations. Life with 3 kids has a way of going off track at the most inopportune times.

Thus far, I have a gift basket for children of all abilities put together for the silent auction and will be assembling folders of information, local and national resources to hand out to attendees. A BIG THANKS to Rebecca at The Bates Motel for hooking me up with some awesome 2009 DSANV calendars. I'm hoping this is a great way to reach people who are working with new moms and babies. I see a chance to advocate for them in their earliest days!

If I have time, I'll add a picture of the basket and folders tonight. I keep finding more articles to add and have ANOTHER trip to Staples planned for copies.

The Real Me

Tricia at Unringing the Bell tagged all her readers for this, and since Goldie and I are big Georgia fans we obliged. So if you've ever wonder what it would look like if you could see me while I'm reading your blog? Here it is:

This is our bedtime routine. I can take lazy to a whole new level. Seriously, I'm having a pretty good night. The kids are in bed (maybe not their own, but A bed), laundry turning in the dryer and washer, Cream of Wheat in the crockpot for breakfast, dishwasher is running, chicken eggs collected and the animals are fed. I wish everyday could go so smoothly.

Three

The number of ounces Goldie drank from a cup today! Finally! See, while Goldie can eat pretty much anything, she has a tough time managing liquids in her mouth. We've tried straws, open cups, water bottles, and sippies. She can get the water in, but it streams (or spurts)back out or her eyes get big, she sputters and chokes. I think because of this she became a very reluctant drinker. Who wants to feel like they're drowning? Up until recently I wasn't too worried about it because she nurses so much. But, now it means she nurses sooo much. The mim mims were her main source of liquids.

Then, this evening, I put a little too much salt on the popcorn and she guzzled 3 ounces of blueberry tea. (The PT laughed when I told her that's what I put in her cup. Seriously though, I make it myself so its cheap, has less sugar than juice and more flavor than plain water.) Her cup of choice is an Avent sippy with the soft spout. Once she is drinking consistently we can work on the straw thing. Goldie has also been signing drink and making the k sound.

And for dinner tonight, we had curried chicken. I thought it was a tad spicy (my tounge is delicate) but Goldie likes her food with flavor! That, she gets from her Dad. He's never met a hot sauce he couldn't handle. I can see them eating hot wings together some day.