One day with no doctors, please?

We have seen a lot of doctors the past few days. Let's see ... for a stats update, Nika is 25 lbs and 32.5 inches tall.

Yesterday morning Nika had a swallow study done. No real reason other than I like to be proactive with my girls. Well, Nika does have some funky swallowing issues, but mostly the reason is that kids with Down syndrome have low muscle tone, which also can affect the way things work on the inside, causing aspiration.

Anyway. Nika is not aspirating, however apparently there are remnants of food that are sticking around in her esophagus after she swallows. The speech therapist basically told us to give her lots of fluids when she is eating to wash things down. I wonder what causes this? The only other issue is that Nika sort of accomodates her swallow by putting her head and chin sort of down and forward. I have noticed this on occasion, but not always. I guess that isn't technically correct eating form, but at the same time, the therapist told me that they try to teach people who have issues to eat that way.

Who knows.

So from here we basically have a lot of work to do to strenthen her mouth. Despite the low muscle tone in her mouth, she doesn't really have tongue protrusion, which seems odd to me. I think I am going to order some of the straws and horns that are part of the Talk Tools therapy. I have also noticed that instead of using her lips to pull food off of a spoon, she uses her teeth ... which is the wrong way to do it. So I have to figure out how to erase two years of incorrect mouth placement and fix it.

Fun times.

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Yesterday afternoon, Nika and I went to the dermatologist. I went for followup on my pre-cancerous spot ... and to have a skin tag removed frozen off. Gross. And ouch.

I took Nika with me because I wanted the dermatologist to look at some spots on her. They are essentially like sand paper spots on her thighs and her biceps ... the thighs being worse. She gained another diagnosis ... Keratosis Pilaris. Apparently it is really common in people with dry skin and even more, people who have Down syndrome.

So ... we got some prescription steroid cream for the spots. We were told to use a gentle soap, like Dove, and Cetaphil for a lotion. I wonder what Cetaphil does that Eucerin or Aquafor doesn't do. Either way, the dermatologist said Cetaphil, so we'll go with that. Because Eucerin and Aquafor haven't gotten rid of it.

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This morning Nika and I saw the pediatrician to discuss her immunization schedule. Thus far, we have been doing titers to figure out what exactly she is already immune to. I really didn't want to reimmunize her if we didn't need to. I told the doctor I wanted to do it slowly ... perhaps one shot per week. Immunizations make me really nervous because of all the autism accusations ... but I guess it doesn't make me nervous enough to not do it.

So today Nika got her first shot ... Diptheria, Tetanus and Pertussis. The pediatrician is coming up with a schedule for the remainder of the immunizations. We also got a script for her AAI xrays that we need to have done before her ABR.

Phew. I think that is it for now.

Medical Updates

Last week Payton saw her geneticist. She weighed in at 36 pounds and is 37 inches tall. She falls within great percentiles on the typical growth chart, so her geneticist is thrilled with that.

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We discussed her speech and the doc would like us to start using pictures boards here at home. Sigh. As if we need something else to occupy our time. I'd rather go more hardcore on signing, because she finally is doing great with imitating sign and using it without being cued.

*trying to remain positive*

Payton's speech is just so ready to come out of her mouth, I can tell. It is like we are standing at the top of a mountain, but we just can't pull ourselves over the peak. She has been doing really well these past couple weeks as far as imitating sounds and even imitating intonation when she isn't necessarily imitating sounds. Her favorite new word is shoes ... it is so cute. I need to make a list, but other words ... or approximations ... she has been saying is pizza, Mason, bubbles, pop, all done, dog ...

She talks all day long. We don't always know what she is saying, but I'm pretty sure she knows exactly. Last night she sat on the couch and read a book to her doll. It was so cute. She held it outward like her teacher does at school, flipped the pages and read the entire thing ... in her own way. I just sat there and smiled at her ... that chick makes my heart swell out of my body.

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We also discussed Payton's horrible eating habits with the geneticist. At times, I have been at the point of wanting to get her into a feeding clinic. She eats chicken nuggets at least once per day, if not twice. That and pizza are pretty much the only main foods she will eat. Although she is getting better and better with pasta ... finally! She does eat yogurt and of course, anything salty like chips or crackers. The only fruit I can get her to eat is mandarian oranges ... and sometimes that comes with a gag. And veggies? Forget it. That is why I give her Juice Plus ... in gummy form, which she will also finally eat.

Her eating issues have definitely given me a run for my money. Her geneticist is not completely concerned, as Payton's growth has been excellent and it is clear that she is getting the nutrition she needs. We also give her Nutrivene, so she is getting some of what she needs there too.

*Disclaimer: I did not mention Nutrivene for anyone to come here and be negative about it. So please, refrain. And for those of you who do not know what I'm talking about, just know that the use of Nutrivene is very controversial. Nuff said. :o)

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Let's see ... we also got scripts for bloodwork and we will have another set of AAI xrays done. I can't wait to see what her iron level looks like, because her Restless Leg Syndrome is out of control ... and low iron contributes to that.

Other than that, Payton is doing fabulous. She is such a strong little girl ... the doctors are amazed at just how strong she is. She fights them tooth and nail ... LOL. She is feisty, like her mama.

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I took both of the girls back to the ENT yesterday to discuss hearing, speech and tubes. Payton's right tube fell out awhile ago and the left tube is blocked. So I guess we are getting no benefit from tubes right now and the plan is to replace them. Nika's ears continue to look great. She has a little wax build up, but nothing that is alarming.

So we discussed speech and whether or not the girl's are hearing to full capacity. We never get much of a reading on the tympanogram from either one of them, but their small ear canals could be batting against us. We have decided to get a sedated ABR for both girls just to be sure and to know what we are working with. I am less than thrilled about having to sedate them, but I think having these results will help us to know what we are dealing with, if anything. I like to be proactive. Both girls will be having AAI xrays beforehand, just to make sure there are no issues with their necks in case they would have to be intubated. God forbid.

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And now ... little Ms. Payton is sick. I'm not sure if it is all the changes in weather we have had or what. She has a croup cough, is wheezing and now has a fever. Could summer come and stay please?

Test Results

Whew, where do I start? We have had a lot of medical testing done here lately ... fun stuff!

Payton ... over the summer, I found a deer tick in her head when we were at the store ... you know, the really tiny deer ticks ... the ones that cause lyme's disease. Ugh. Instead of messing with it in the middle of the store, I wanted to wait until we got home. Well ... I forgot. And I remembered days later. I swear my mind is going. I ended up removing it, but I do believe the head broke off and with her fighting me, I couldn't get it out. I was told it would fall out on its own, but I sort of freaked out and told them I wanted to test her for lyme's disease. So we did ... finally. And the test was negative. Thank God!

Nika ... you might remember me mentioning all the bloodwork she has to have done. We have done three stool samples and two of three rounds of blood draws. One more to come. The stool samples showed no parasites and no giardia. Whew! Round one of bloodwork revealed that she is not immune to MMR (measles, mumps and rubella) or chicken pox, so she will need to be immunized for those. Hmpf.

Another test that we wanted to have done on Nika was an ultrasound of her abdomen. I don't think I have really talked about this yet, but her Russian medical record revealed that she had a history of calcification on her kidneys. It also said that she had diffused changes of the liver, reactive changes of the pancreas and an enlarged spleen. Oook then, that is sort of scary since that pretty much is every organ in the abdomen. So we hired an American Clinic in Russia to do an ultrasound on her belly. They reported that everything looked fine, but we wanted confirmation of that here in the U.S. using the medical technology that we have.

So today I took Nika for her ultrasound. She did fabulous, by the way ... it really is sort of sad how she is sort of trained, for lack of a better word, to sort of obey. Does that make sense? We are trying to let her know it is okay for her to sort of come out of that shell, but how do you really teach that? Anyway ... her ultrasound today showed that all of her organs look completely normal. Thank God again!

GI Update

Payton went to the GI today for a check up. We increased her Prevacid dosage to 30mL per day. I figured since she has been on 15mL since she was just a little thang, that it only made sense to increase the dose since her weight has increased. Since she has silent reflux, I am just nervous more damage is being done than we are treating, so this is good .... I think.

As far as her stats, here is where she falls on the Down syndrome chart ...

32 pounds ... 90th percentile
35.5 inches long ... 90th percentile
47.5 cm head circumference ... 50th percentile

Sleep Study: Take 2

Last night Payton had her second sleep study ... this time to see if taking her tonsils and adenoids out did any good for her sleep apnea. I don't really know how to put it any milder, but I HATE sleep studies. Trying to do them on young children with all the wires and sensors is ridiculous. I'm waiting for someone to invent cordless monitors ... that person will make millions.

After we waited for TWO HOURS in the waiting room for them to clean the rooms, it was well past Payton's bedtime. So combine that with someone messing with her body and face, well it is not a pretty sight. She did okay while the wires were being attached ... but when it came time to put the microphone sticker on her upper lip and putting the nasal canula in ... I knew we were doomed from then on.

The tech helping us was losing his patience with lack of compliance and pulling the microphone and canula off, but really ... what do you expect from a two year old? After I got her to sleep with everything attached, she pulled the canula out and I just left it. The tech came in around 2am, turned on all the lights and set out to repair the broken lines {the microphone sticker had also come unattached from the wire}. I was SO annoyed ... not because he was repairing the lines, but because he felt the need to turn on the lights and get huffy. The microphone sticker was too big for her lip and was partially attached to her actual lip. Well it pulled some skin off and made her lip bleed. I was frustrated and told him it was too big, at which point he proceeds to tell me he has been doing this for 10 years and he knows how to do his job. What does that have to do with the fact that he is pulling the skin off my baby's lip? GRR. Anyway, we get the microphone sticker and nasal canula back on her and I get her back to sleep.

She tosses and turns all night and I jump anytime she moves for fear that she will pull the microphone and canula off again. I pretty much got no sleep, so I'm not feeling the greatest today. Sigh. Let's pray that we don't need another one of these for a LONG time.