Peace. And chaos.

As I sit here overlooking the ocean from a couch in my aunt and uncle's ocean front home, I feel the desire to blog. To try to catch up my blog. It is raining outside, but ain't no rain gonna stop my husband and kids from catching waves in the ocean. And here I sit, watching them pounce on the waves from afar.



I'm pretty sure I have not felt peace like this in a long time.

Our life is chaotic, there is no doubt about it. Sometimes I sit back and wonder what our life would be like without having to sit through six speech therapy sessions, four occupational therapy sessions, two physical therapy sessions, countless doctor appointments and so on per week. Knowing the alternative would not include my girls, I am happy to live the chaos.

But having peace every once in awhile is so nice.

*

My dearest daughter Payton.



Several months back, we began to think Payton had Childhood Apraxia of Speech. We had her evaluated at the Down Syndrome Speech and Language Center for Excellence at Loyola College Columbia Center, which was founded by Libby Kumin ... who in my book is the Down syndrome/speech guru. The evaluation was very extensive and informative ... and she was officially diagnosed with apraxia. 

Since that time, we have added a PROMPT certified speech therapist into our regime ... and Payton has come so far. She still has a really long way to go, but it is so nice to see her making progress. Knowing that she will be starting kindergarten next fall has sort of put me in a panic to get her all the help we can to get her talking before then.

In conjunction with all of this, we finally decided to have her seen at a craniofacial clinic to see if indeed she has a submucous cleft palate. The history on that is when she had her tonsils and adenoids removed back in February 2008, her ENT noticed that she has a bifid uvula ... which is sometimes indicative of a submucous cleft. Although Payton's palate was palpated at that time and no evidence of the cleft was found, her ENT left some adenoid tissue in tact as a precaution. 

Given her ongoing speech delay, we just really wanted to know if she indeed was dealing with a submucous cleft. At the clinic, we saw numerous specialists ... a craniofacial surgeon, an ENT, an audiologist, a pediatric dentist, a speech therapist, a pediatric orthodontist and others I'm forgetting. The bottom line was that everyone was satisfied with Payton's progression. Given the fact that Payton can produce certain sounds, the speech therapist did not feel that she has a cleft. We left not having a 100% answer, but agreed with the craniofacial surgeon in that we will never know for sure until Payton will allow us to stick a camera up her nose so that they can see her palate.

A couple years ago, Payton was diagnosed with moderate sleep apnea and restless leg syndrome. After removing her tonsils and adenoids, her apnea was reduced to mild. A few months ago, she had a follow up sleep study done. And now ... she has severe sleep apnea and she still has restless leg syndrome. Groan. The average between her apnea and hypopnea incidents is 24.5 per hour.

Cue the BiPAP.

The day after we received her diagnosis, we had someone in our home installing Payton's new machine and instructing us on how to use it. We get one month to desensitize her to the mask and then we will go through an overnight study using the BiPAP to figure out pressures or something like that. 

Surprisingly, she has done very well. We have a daily schedule that tells us how to introduce it to her and she is moving faster than they expected (i.e. let her play with the mask for week one then move into having her put it to her face for like 3 seconds). She has already fallen asleep several times with the mask held to her face by her Daddy ... the hardest part seems to be getting her to wear the headpiece that holds the mask in place. 

She is making progress and that is all that matters. We are very hopeful that allowing her to get a better night sleep will affect her cognition and her speech. It might be a long shot, but that is what we are going for.

*

The girls will both be attending preschool this fall through the county Child Find program. We recently revisited each of their IEPs and requested placement for both of them in peer modeling programs, which is what Payton was in this past year (i.e. 6 typical children, 6 children with special needs). I felt confident that Payton would get the placement since that is where she was last year, but I was not so sure about Nika. But she got it and I am beyond thrilled!  

The girls will go five days a week to different schools, so as to not have them in the same class. I think it would inhibit both of them so this was a request that I made that was granted.

*

Onward and upward ... the beach awaits!

Nika ... and some of her doctors.

Pediatrician ...

A couple weeks ago, Nika had her three-year well visit with our pediatrician. The visit went well, however there were a few things I wanted to discuss with her.

• After we received Nika's referral in Russia, we saw that her medical record stated that she had a Grade III brain bleed at birth and semi-compensating hydrocephalus ... those were the translations, anyway. These two things were obviously a concern to us and we needed to know more information before we adopted her and brought her home.
  
  We were very lucky to be able to have her seen in-country at the American Medical Clinic. They performed an ultrasound that revealed no evidence of calcifications on her brain -- which may have been there if she really had a brain bleed -- and no evidence of hydrocephalus. Where these diagnoses came from ... I don't know. Heck, I don't even know that an ultrasound was enough to detect what we were looking for, but it was enough for us to bring her home.
  
  That said, the one thing we did find out during the ultrasound was that her ventricles were measuring a tiny bit large ... as in, a couple milimeters larger than the standard for a child her age. Ahh, so many variables there. Anyway, these things have always sort of been kept in the back of my mind ... not knowing whether or not they really meant anything -- or if they were even true.
  
  A few weeks ago, I was reading an article that showed a link between enlarged ventricles and balance. Imagine that. So then the question comes in -- is Nika's lack of balance just a low muscle tone thing or is it something more?
  
  I asked our pediatrician about this and she feels that Nika would be showing more external symptoms if she really had something serious going on. And given the fact that she seems to be doing just fine, it isn't worth sedating her for a CAT scan to see if something really is going on.
  
  All I can do is trust her. And for now, I do.
  
  
• Over the summer, we realized that Nika does not sweat. I discussed this with our pediatrician and we agreed that I need to pursue it further at our local Children's Hospital.
  
  
• We discussed the fact that Nika does not get any one-on-one therapy at school -- and that is a battle I've already fought. She does ... however ... get private speech and physical therapy through our insurance and her Medicaid -- thank the Lord for that. Our pediatrician and I discussed also getting her occupational therapy, as it is clear she would benefit from it. I told her I have chosen my battles thus far, but agreed that I have been thinking about getting her an OT evaluation and so that is what I am going to do.
  
  
• Nika is almost caught up on her immunizations. She still needs a couple booster shots, but enough time has not lapsed yet for her to be able to get those. Oh ... and we still have a year to go before she will be getting any MMR vaccines.
  
  
• We discussed Nika's two bouts of strep throat over the past month. Just to be sure that this last round of antibiotics got it all out of her system, we tested her again and sent it to the lab ---> negative, finally!
  

Geneticist ...

Last week, Nika saw our geneticist. A few people have asked us why we see a geneticist and I guess the answer is that our geneticist basically serves as a developmental pediatrician for us. I discussed all of the same concerns with our geneticist and came to all the same conclusions. I got scripts for our annual bloodwork and got Nika's stats ...

Weight -- 26 pounds, 10 ounces
Height -- 35 1/4 inches

Down syndrome growth chart -- Weight: 25th percentile, Height: 75th percentile
Typical growth chart -- Weight and Height: 10th percentile across the board

So yeah, that is why everyone is so surprised when I tell them she is three years old. Oh, she is so tiny! Yes, I know this people. She is in the bottom 10% amongst her peers for size.

Sleep lab ...

This past week, I had a follow up appointment with our sleep lab to discuss Nika's second sleep study. The first one was inconclusive.

So the bottom line is that Nika does have obstructive sleep apnea. The specialist that we saw told me that textbooks do not give guidelines to classify children Nika's age in a category -- be it mild, moderate, etc. This sort of confused me, since we have previously been given a diagnosis of moderate sleep apnea for Payton, but whatever. The specialist basically told me that he believes Payton was classified using adult guidelines, which clearly you cannot do for young children. Sigh.

At the end of the day, Nika had approximately four episodes per hour that she stopped breathing while asleep. The specialist said that if he had to classify her into a category, for a child her age he would say moderate obstructive sleep apnea. Being as though Payton had way more than four episodes, I guess he would have diagnosed her with severe.

Who knows.

Beyond that, during each episode, Nika's oxygen is dropping to 89% ... while she is maintaining 98% the remainder of the time. That was quite concerning to the specialist.

His recommendation is that she have her tonsils and adenoids removed. Given her extremely high and narrow palate, he also told me that I might want to consider a palate expander for her -- and for Payton, actually. He told me that expanding their palates would allow for air to move more properly and blah blah blah.

Next step --> meet with our ENT to discuss the sleep study and the specialist's recommendations. I guess surgery is looming.

ENT ...

While we were at the sleep lab, I stopped into the ENT's office since it is right next door. Nika's nose has been a junky mess, even after being on antibiotics for two rounds of strep in the past month. They agreed to squeeze us in ... thank God they did. Our pediatrician can't really see in her ears ... although they try to claim they can. Riiight.

Our ENT took Nika under the microscope -- double ear infection. That ... in addition to her junky nose = one round of Omnicef. And if the nose is not clear after the 10 day round, refill it for another 10 days. Oook then.

When is it summer again?

We saw the ENT today

Today before school, I took Payton to see the ENT as a follow up to her sleep study results that we got last week. Speaking from a surgery standpoint, her ENT is very pleased with the results, despite the fact that she still has mild sleep apnea. The number of apneas per hour decreased significantly, so that is good. The flip side is that she still has apnea episodes and there is nothing the ENT can do about it. We were told that we can see a pulmonologist and an allergist to see if they have any recommendations ... if not, we just live with it.

Onto the Periodic Limb Movement Disorder ... we will be getting bloodwork done to see if any of her levels are off. Apparently that is something that can cause this disorder to be worse, although it often times goes hand in hand with sleep apnea.

Sleep Study: The Results

I got the results of Payton's second sleep study the other day ... sigh.

Diagnosis:

1) Mild obstructive sleep apnea syndrome, with sleep fragmentation, but without significant hypoxemia or carbon dioxide retention. Blah blah blah. Vigorous medical therapy for upper airway obstruction is recommended.

2) Increased leg movements are present during sleep consistent with Periodic Limb Movement Disorder (PLMD), and associated with sleep fragmentation. Further evaluation of PLMD is suggested.

After her first sleep study, she had moderate obstructive sleep apnea, so I guess that means taking her tonsils and adenoids out helped bring it down to mild? But now we are throwing in this PLMD, which I probably could have diagnosed myself. Both of my kids are very restless leg sleepers. Sigh again. The treatment for PLMD includes a CBC and iron studies, including serum ferritin, with treatment with iron for 3 months if ferritin level is <50 mg/dl.

I wonder if her iron level is low? Good thing we have a script for bloodwork and I will be making sure that the script includes this iron testing. She had low iron when she was an infant, but the kicker is that kids with Down syndrome tend to have higher iron levels, so how she got a low iron level is beyond me. We will be following up with her ENT this Thursday to see what is next.

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.