Wordless Wednesday - Shhh

Nasonex

10 days ago I posted about Goldie still not being able to breathe, here. I just wanted to update that things are 100% better. The antibiotics weren't working so her ped had us stop them. Then she asked if we wanted to try Nasonex or Singulair. Nasonex is a nasal spray to reduce inflamation and Singulair would be an oral medication that also reduces inflamation. I opted for the nasal spray because I thought it would be best to treat just the problem area. Wow, what a difference it has made. After less than a week, she breathes quietly through her nose with no congestion. I don't know how long we'll have to keep using it, but for now I'm not messing with a good thing. Its only one spray per day and you don't build up a tolerance to it like OTC nasal sprays.

On the baby front, I'm 39 weeks and really uncomfortable. Apparently, most of my weight gain is just that, mine, the baby isn't expected to top 7 pounds. After doing some research, I found that my mom and my brother were both around 6 1/2 pounds. That put my mind at ease. As the midwife put it, "Your growing a baby that is the right size for you." Goldie was so much smaller than my first two and I always attributed it to the DS, maybe I need to rethink that. I should go to bed now, but even that is painful and I don't really sleep all that much anyway. Just mother nature's way of getting me ready for the big day!

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?

What do you do all day?

As part of my baby preparations, I wrote down Goldie's routine for the day. My mom will be taking care of her and I want to make it as easy on both of them as possible. Plus, I can go into labor with a clear mind that Goldie's needs are being met. It may also come in handy if anyone stops by to help out after the baby is born.

I couldn't believe once I started how many little things I do for her. I also learned that while I may feel disorganized, we really do have a routine that we follow everyday. Its flexible, but consistent. It also answers the age old SAHM question, "What do you do all day? Don't you get bored?" I thought I would post just the morning to lunch portion, I don't want to completely bore you. If this doesn't seem like a lot, keep in mind that all this goes on while homeschooling my 2 older kids, making their lunch, etc...

Goldie’s Schedule

6:30-8:00 Good Morning!

Potty -Right after she wakes up Goldie pees on the potty. She is usually dry in the morning.

Breakfast Goldie likes: - toast w/ raspberry jam or peanut butter
-Waffles w/ maple syrup to dip them in
-banana
-cereal w/ soy milk (feeds herself so use 2 bibs and a placemat)
- NO cheese, milk, or yogurt
Drink - 50/50 juice (white grape or oj) and water = 8 oz w/ 5 tsp Thick-It
- add 4 drops of Vitamin D (only added to morning drink)
Ginkgo - give .50 ml in the morning (not afternoon or evening)

Get dressed, puts her pajamas away in drawer

Playtime - read books, do puzzles, play babies, watch Signing Time, helps unload dishwasher and puts her dishes away.

10:00 Potty time and snack. Encourage Goldie to drink.

Lunch - 1 orange probiotic and ½ tsp Children’s DHA
- both are on door of refrigerator, use medicine syringe for DHA
-Goldie likes: leftovers from dinner, pb&j, fruit, salad, canned pasta, chicken, salty foods, tuna, and soup
Potty

Nap - Goldie is ready for a nap by 1:00.Sometimes sooner if she was up early. She likes to rock in the recliner and listen to her GloWorm (while I sing along). Sometimes we lay on my bed and I sing to her.

Potty - Goldie usually poops after her afternoon nap. Be patient this can take a long time. It’s a good time to read some books.

So there you have it, a peak at the day in the life of Goldie!

I also did not intend this post to be about nutrition, supplements, or potty training. But, I realize people may have questions after reading it. I consider all of Goldie's supplements essential for her. She has to have probiotics and fish oil(Children's DHA) to avoid constipation. The fish oil and melatonin work together to help her sleep. We also see a difference in her speech and cognition when she is taking Ginkgo. As for potty traing, we aren't. We have practiced elimination communication since Goldie was 4 months old. Our road to being diaper free is just a little longer than most!

Honey, We Have a Problem

That what I heard when Hank was upstairs putting up the girl's "new" bunk beds. Curious, I go up to see what's going on. He quietly takes my hand and points into our bedroom,at the ceiling. There is a HOLE and BEES are flying into the room. That was definitely not there this morning when I got a shower. While I called exterminators, he set some foggers off in the attic and sprayed some bee killer in the hole. Of course he put duct tape over it when he was done. What man could pass up a chance to use duct tape. That should hold them back until Friday when the exterminators come. I'll be sleeping on the couch in the meantime. Hank assures me its safe to sleep in our room because bees sleep at night. That's nice to know, I'll still be on the couch.

Goldie is doing ok. Her appetite is pretty good, but she's still not crazy about drinking anything. Her sleep has been horrible. She wakes up in pain. I give her the Tylenol w/ codeine. She hates it and puts up a huge fight. Then she's up for a couple hours. So, tonight we're going to try the regular Tylenol. She doesn't like it, but tolerates it somewhat better. Her sleep schedule is off and she takes longer naps during the day. Last night I couldn't get her to bed until almost 12. Then she was up by 5. Right now, she's laying on the couch kissing her baby. Maybe they're ready for bed.

ENT Appointment, AAI x-ray

Goldie's ENT appointment went really well. He answered most of my questions before I could even ask them. He wants her to stay overnight, so I didn't have to ask for that. We discussed the possibility that her stay could be longer if getting fluids in her becomes a problem. I really like this doctor, he was very attentive to our conversation and thoughtful in his responses.

Goldie's apnea is in the mild range so he feels the surgery should eliminate most of it. Her tonsils are big, not huge, but big enough to cause the mild sleep apnea she experiences. Of course this can vary on any given night depending on what position she sleeps in or if she is sick.

After our appointment they were able to do her bloodwork and her AAI x-ray before they closed at 5:00! I was impressed.

I'm not able to hold Goldie for the x-ray, but Hank was supposed to meet us. However he was still at work in another state. So, a nurse held Goldie while I waited in the hall. In the hall was the computer that the x-ray pictures come up on. I immediately noticed a gap between her first and second vertebrae. Of course I have no idea how much of a gap is normal, so I've been worried sick ever since we left. I asked how soon her x-ray would be read and was told tomorrow. I was not going to ask the tech. Lesson learned from the sleep study. I am praying everything is ok. My mind always imagines the worst case scenario. The funny thing is, if I wasn't unexpectedly pregnant I wouldn't have pushed the sleep issue and she wouldn't have had her x-ray until next year. So, if its normal I can relax, and if it's not we'll be glad we know so we can keep her safe and do whatever else is necessary.

Sneek Peek at the Sleep Study Results

I took Goldie to the pediatrician this week to get another script for her bloodwork. She was more than happy to add zinc and selenium. She also wants to check her calcium since she's been constipated. She agrees that is most likely due to the lack of fluids. Goldie has been drinking more, but she's not happy with her chin to her chest everytime she takes a drink. I will be talking to the ENT about that next week. (BTW, I kept my journal, but the SLP at Children's never followed up with us.)

So while I was updating her on Goldie's health she mentioned that she had the sleep study results. I was so excited to get them before our visit to the ENT so I can have all my ducks in a row when we get there. The results are... abnormal sleep pattern due to an obstructed airway. Recommend removal of tonsils and adenoids.

The ped. reminded me that we don't have to follow the recommendations, the choice is ours if we want surgery or not. (I don't know what our other options would be. We can't not treat her sleep apnea.) What I want is for Goldie to be able to sleep at night and wake up rested. The last two nights have been awful with her waking constantly. Even with an extra nap she is still exhausted by dinner time. Sometimes crying and hitting her herself in the head. (headache?)

I have to admit my first reaction to the results, was to laugh and say "no, really?" I'm not happy that Goldie has sleep apnea, but I'm thrilled to be vindicated. This means I get to finish my letter to the dr at the DS Clinic who suggested breastfeeding was the cause and sleep training the solution.

So, if anyone has any suggestions or knows anything I should ask the ENT about, please comment!

Sleep Study

Finally, everyone is in bed, so I'll let you know how the good ole sleep study went. First, the tech was very pregnant and did not want to be there. I can sympathize, having been 9 months pg three times in my life, so I cut her some slack. But, I don't think she would have had much personality anyway. More on that later.

Before we start, she insists Goldie be strapped into a papoose board to attach the wires to her head. I was initially resistant, but I knew it would go soooo much quicker if I didn't have to restrain her and this way I could actually comfort her. It took 30 minutes to get that part done. She cried some, but was consolable and liked it when I sang to her. And why didn't someone tell me the use a mini air compressor to attach those things? I think that scared her the most. Another 15 minutes to put on the belts and hook up her legs. After that she was exhausted and only nursed a few minutes before falling asleep.

During the night she woke up at least every hour. I was able to get her back to sleep rather quickly and only had to nurse her one more time. We were done at 5:30 and on the road by 6. She was so excited to get in the van and didn't even fall asleep on the way home. I stopped at McD's and got her a hashbrown. She has her own sign for McDonald's. Sad, I know.

Back to the tech. I like to get along with people who are messing with my kid, so I tried to make small talk and stay very happy and cheerful. She explained, more than once, that if I couldn't handle Goldie being strapped down we could quit and go home. I told her that being a mother of 3 had seasoned me. I've held kids down, for dentists, bloodwork, stitches, x-rays, casts, etc... so this was really going to be ok. As long as Goldie was able to calm down and not crying till she puked we'd be fine. Then she asks "So do your other kids have Down syndrome, too?"

Go ahead, read that again if you need to. Hank and I have been asked a lot of things, but this one takes the cake. I laughed and told her no. Seriously, how can you work for a children's hospital and not know this isn't hereditary.(I know you can carry a translocation, but those are rare and not all translocations are hereditary.) She acted like they had seen a lot of kids with DS come in for sleep studies. I hope she's not a nurse. I'm wondering what kind of schooling she had to qualify her for this job. Did it include a biology class? When I got home Hank told me I should have said "I caught it from my husband and now the kids have it. We don't know how to get rid of it." LMAO.

I was also told repeatedly that "all kids with DS sit up in their sleep." Umm, don't they only see the kids that don't sleep well. If Goldie wasn't sitting up and waking frequently, I know we wouldn't have been there.

On a positive note, I didn't get any crap about breastfeeding or laying with Goldie to feed her when she woke up. They get a thumbs up for that!

We'll know the results in two weeks. I wasn't asking the tech what she thought.

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!

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!"

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.