One Day Per Time Zone

They say you need one day per time zone to adjust to a change. That means that tomorrow we'll all feel normal again. It has been a wonderful whirlwind. Our flights on Wednesday went perfectly. We were worried about the short layover between our international flights, but it was all good! A great new policy meant that we didn't have to pick up our luggage between flights. And we were first in line for customs and security. We ended up having time to spare! Much to Andrew's chagrin, I insisted on spending it at a restaurant getting some quick eggs and bacon (no meals on the flights and I can only get so far on almonds and craisins- all I could think of to pack that would meet my wheat-free needs). My normally laidback husband gets a little skittish in airports and he was visibly relieved once we were on our final flight.

There was a huge welcome party at the airport which was so awesome. The kids weren't shy at all about doling out hugs and smiles. On the way home we stopped at a clothing store and I scored huge. Whoo! First new non-maternity clothes in a year and a half. So fun.

That same evening I took Josh to see a chiropractor. He said Joshua had stuff going on in his neck and in his back at the stomach level. Gave him gentle adjustments. Hard to tell if there's much change because Joshua is under the weather with the sniffles.

Though he did have a very extended happy time on the floor by the bed this morning! I put him down on his tummy and turned to organize some presents. When I looked again, he was on his back with only his lower half sticking out from under the bed, happily munching on the bed skirt.



The kids are all in their glory. I've barely seen Eva and Micah- they're too busy hanging out with Grandma or playing with cousins or the toys here. Joshua has been quite happy to go to Nana or Grandma.

We went to Christmas Eve service and got to see the Rehmans- whoo! We sure have missed those guys.

Had a nice quiet Christmas Eve dinner and the big kids didn't put up a fight about going to bed. So tired. Just finished wrapping presents and now it's time to hit the hay! Looking forward to a day with no outings, so I can just soak up the atmosphere and really settle in and enjoy. The last two days there has been so much to DO it's been hard to be still and really feel.

Orthopedist

Josh had a visit with an orthopedist this morning. Great news! Joshua's hips look totally normal! Also his spine is nice and straight. Often people affected with NS have scoliosis. The doctor wants followup xrays at 8 months to make sure all continues to be well. He said that carrying him in the sling with his legs in the froggie position is great.

I asked whether Joshua's hips are smaller than normal. He said they are the right size, but just look small because his tummy is quite round. He said that his 'intestines are thick', whatever that means. But since Joshua has digestive problems I would like to follow up on this peculiarity.

So we head off on vacation with pretty good peace of mind, plus an appointment with a chiropactor tomorrow night and with a pediatrician at the end of the month.

He has the sniffles, as does Eva, so we pray that their symptoms remain mild and especially that their ears don't hurt them on the
planes tomorrow. Josh has been nursing so much, I like to think I can see him growing before my eyes :) The great thing about airplane travel is that Josh will be just where he likes to be- in my arms. Yay for public transportation in that respect!

Monday Morning Sights

The kids were all up on the early side this morning and with nowhere to go, got a chance to watch some cartoon classics. Oh, the antics of Shaggy and Scooby, and those silly Looney Toons! So here they all are still in their jammies.

Sweetie

Spidey

Smiley

Still working out the food thing a bit... maybe something in the meal I had at a restaurant on Saturday? Josh had a restless night last night so something was bothering him. But that didn't stop our little guy from grinning at his Mommy! I think it's because he knows he'll be able to finish all his naps today. So often during the week he falls asleep right before we have to go in the car. And car sleeping isn't a valid option as far as this fellow is concerned. :)

A Little More About Joshua's Appointment

As Andrew mentioned, we were encouraged at Joshua's monthly visit with Dr. Flores. He said that Josh's murmur sounds quieter, his colour looked even better, and developmentally he is right on track for his age. He measured a respectable 62cms (24.5") and a lightish 6kg (13 lbs). He has gained close to a pound in the 3 or so weeks since our last visit though so that is great. He has been crying less and eating more so I had been hoping for a decent gain.

Dr. Flores ordered some bloodwork so we had that done right away. So hard to see Josh screaming with that fat needle in his teeny vein. But the tech got it first try so that was good. Naturally I rushed home with the results and Googled my buns off. From what I could tell his white cells and platelet counts showed an immune reaction- perhaps from the episodes he had at the end of the week? Dr. Flores just said that his CDC was quite normal. He is slightly anemic but apparently that can be normal in a baby his age. I will work on getting more iron in my diet, I think. Bleeding disorders commonly come along with Noonan Syndrome but Josh if anything is on the other side of normal, an excellent clotter it seems. And this is the great news: his calcium levels came in smack dab in the middle of normal! PTL! His phosphorus levels are a bit high and Dr. Flores would like to check that again later on, but as per my Googling perhaps there is a relationship to the now-normal calcium levels. I don't know! I do know that it has been fascinating to see all his different test results.

I put together our insurance claim last night. The tests and consults sure add up! I am grateful for our great insurance coverage. They have been really good to deal with as well.

On Tuesday we see an orthopedist. The geneticist was concerned with the range of movement in his hips so she ordered some x-rays. Both she and Dr. Flores thought that they were probably all good, but she referred me to an orthopedist to be sure, since sonogram is really the best way to be sure on young babies like Josh. I'm glad to have a chance to visit a specialist and get that peace of mind, especially since skeletal deformities can come along with NS as well.

In other great news, good friend Torie scored us an appointment with her highly recommended pediatrician in BC. So grateful to have the opportunity to have Josh assessed by someone with different experience. Also with that consult I would think that the avenue would then be open for a referral to a Canadian specialist, should we need it.

Overall, we think Joshua is doing awesome. We are not wringing our hands about him by any stretch of the imagination. We just recognize the importance of early intervention, and with his diagnosis there is an increased possibility he will require some sort of intervention. So we want to know about any issues sooner than later.

Joshua's personality is showing more and more as he grows and is more comfortable. He has a good sense of humour, I can tell already. Patience isn't his strong suit. He is a visual and social person; he is quietly happy when there are lots of people doing things around him. He is a little on the sensitive side. He is chatty when he's happy, and honestly, it really sounds like he tries to repeat the sounds we make. He thinks it's hilarious when I bicycle his legs. He loves the shower. And he is very attached to his Mommy. Emotionally and physically. Thank God for slings and wraps!

Random Pictures from Saturday

We had an appointment with Dr. Flores yesterday and we were encouraged. Josh's heart sounds better, his calcium was in the right range and his blood work came back okay. God is really working!


Dana and Joshie.


Bertha babysat yesterday for us and painted up Micah's face. (and hands)
Micah cried a lot this morning when we washed it all off.


Bertha did a great job on Eva's face.


Bertha with the kids.

A tea party and growing Josh.

Dana has been blogging up a storm lately so I thought I'd spell her off and guest blog today. But I had to first wrestle my camera back from her. She has been on fire with the photogging. I love it. Although if Dana really gets into it it could mean no early retirement for us.

Okay, so this morning we found the kids with this set up. Ironically they were having a tea party on top of the coffee table. Too bad we didn't get any video because it was quite entertaining. Eva and Micah are playing so well together.







When I got home Dana held Joshie's feet in place and I snapped a few pics of the tall guy. He's even giving out some smiles.




Later, Dana grabbed this shot of Josh and I. Josh actually hung out with me without crying for almost 10 minutes. WOW.

A Typical Morning

A glimpse into what we see and do weekday mornings:

We might see the produce truck... (I would love to buy from this truck but apparently I don't buy with enough frequency and volume to make it worth the seller's while to add my house to his route.)

While it's not unusual to see military convoys, we saw this rather incongruous scene of military trucks- guns, balaclavas and all- parked in front of the local church. I wish the photo were better, but I wasn't sure how apropriate it would be to take a photo so I was sneaky about it.


We travel the short distance down a highway to Eva's school... (39 secs)

Then we wait in line to drop her off at her gate. It's a pretty slick system where the parents don't even get out of the car for drop off and pick up. All the teachers know which cars/parents belong to which children- impressive- and escort each child to and from the corresponding vehicles. Quite safe and efficient.


The usual sights and sounds at the back of the school bus... (15 secs)

Did you pick up the accusatory glance Joshua shot at me?

More Brothers Photos

(again with the ISO 800... my bad)

Joshua had a really good morning. Didn't even cry at all in the car and was happy and relaxed enough that when Micah asked to hold him it worked out great! I was lucky to capture a few smiles from Josh. He smiles at me pretty easily, but stops the minute I cover my face with the camera!

Brothers

I'm really happy with this shot. (I'd be happier if I hadn't shot it at ISO 800...!)

Genetics Lesson

Big thanks to Louise, high school science teacher extraordinaire, for helping me better understand chromosomes and genes and their relationship to one another:

Every cell in your body contains 23 pairs of chromosomes, except for your sex cells (sperm and egg only have 23 chromosomes, not 23 pairs). Chromosomes come in an X shape and each side of the X is identical to the other (the l and the l stuck together in the middle by a centromere make an X). The X's will split when a cell divides so that the same information will go into each new cell. At that point, it will replicate (make a copy) so that it is a full X again.

Each X (chromosome) has a matching X.
xx xx xx xx etc (23 pairs)

The karyotype is interesting because it shows that each chromosome is the right size and has a matching partner. The only one that should not match up is if you are a boy, the 23rd set will have two different sized chromosomes (X and Y that make them a boy). Certain genetic disorders do not have the 23 matching pairs. Trisomy 21 is when there are three of the 21st chromosome which presents itself as Down's Syndrome. Trisomy 18, three of chromosome 18=Edward's Syndrome. The reason the karyotype does not show X's is because they are showing just half of the X which appears as an l because both sides are identical.

A good way to understand the relationship between chromosomes, genes and DNA is the following:
Chromosomes are made up of genes which are made up of DNA in the same way that.....
Sentences are made up of words which are made up of letters. If there is a one mistake in one of the words (one letter off), you can still read it most of the time. If there is a change in an entire word, it's can be hard to understand the sentence, or will change the entire meaning of the sentence, which will have much larger effects. Genes are what determine various characteristics and how proteins are made in our body. A gene is a section of that X shaped chromosome.

Taken from : http://ghr.nlm.nih.gov/condition=noonansyndrome
(Noonan's Syndrome has....)
Mutations in the PTPN11 gene, SOS1 gene, KRAS gene, or RAF1 gene cause the resulting protein to be continuously active, rather than switching on and off in response to signals that control growth and development. This constant activation disrupts the regulation of systems that control cell growth and division, leading to the characteristic features of Noonan syndrome.

The chromosome can also be thought of as a car. If a part (gene) of the car isn't working properly it may have certain affects on the car. Depending on the part, that will determine the way your car functions. Obviously brakes are more `important' than washer fluid, they affect the functioning of the car to a greater magnitude.

Diagnosis

These are Joshua's karyotype results. As the geneticist was talking to us about them, both Andrew and I were frantically rewinding in our heads to high school science. (Louise, wanna do a guest post to fill us in about chromosomes and genes? Seriously.)

Anyway from what I understand, this test is a general test which identifies chromosomal abnormalities. Joshua's test result was normal.

This is the result of the FISH test for William's Syndrome. They use fluorescence to light up certain parts of the cell. They were looking to see if Joshua was missing a certain thing. Because he had matching pairs of red and green this test result was negative for William's Syndrome.

Based on the normal karyotype and clinical signs and symptoms, the geneticist said we should consider him to have Noonan Syndrome. Wikipedia says this about NS:

The principal features include congenital heart defect, short stature, learning problems, indentation of the chest, impaired blood clotting, and a characteristic configuration of facial features. The syndrome is named after Dr. Jacqueline Noonan.

It is believed that between approximately 1 in 1,000 and 1 in 2,500 children worldwide are born with NS. It is one of the most common genetic syndromes associated with congenital heart disease, similar in frequency to Down syndrome. However, the range and severity of features can vary greatly in patients with NS. Therefore, the syndrome is not always identified at an early age.

We are glad to have a diagnosis from the point of view that we can keep a closer eye out for certain things that may come along with the condition, and treat them sooner than we otherwise might. These include thyroid problems, lymphedema (build-up of body fluid due to poor functioning of the lymphatic system), nearsightedness, and speech delays.

The geneticist found that his hip movement is a little restricted and so we are going to get x-rays to rule out any cause other than perhaps his positioning in the womb. This is likely unrelated and is a problem solved by doing some exercises with him to help him loosen up.

She measured his length (twice!) at 62cm. Compared to the 57cm that Dr. Flores measured (twice!) last week. Hm. You would think we'd have noticed a 2" growth spurt. The main thing I take from this is that baby length measurements appear to be highly subjective and inaccurate. And that Josh is doing fine in the length department.

We continue to have lots of peace and hope.

Especially since things have been so much better with and for Josh lately! He is an opinionated fellow, but not hurting any more! He tolerates short tummy time, bouncy chair and swing sessions now. He smiles and flirts. He doesn't need the soother as much. He nurses better. He hangs out in the sling quietly without needing to be bounced. The other day he sat on my lap for half an hour just watching the big kids' Taekwondo class. These are huge changes! He still has a poor relationship with the car seat, but he does have the occasional quiet stretch (which is such a relief- we'd almost given up on conversation in the car).

The nights are pretty good now. Left side and tummy sleeping helps mostly keep the congestion from getting the better of him. Sometimes very early in the morning I'll have to just sit him up so his sinuses can drain a bit, and then we can snuggle back together and sleep until it's time to get up. It seems like it is worse when the duvet is closer to his face so hopefully we'll notice a difference if I can ever get it sunned. Winter very suddenly came upon us and now it's been cold and overcast for days!

Life Lately

Overall things are better around here. Josh has had mostly good days for the last week. Most of his crying is because he has a need, not because he's hurting. (though even Happy Josh seems to be proving himself a relatively high needs baby). He did have a rough patch yesterday morning- but on Sunday I put some chocolate chips in an afternoon coffee (mmm, btw). So, either dairy, or caffeine overload.

The last couple of early mornings he has been restless and I've been up with him at 5 or 6am. Hoping that's not an ongoing trend.

He is a smiley guy! When he's relaxed he smiles and flirts with anyone who smiles or laughs with him. That is SO fun.

Joshua doesn't want to be held by anyone but me these days. Fun times around here while I'm getting showered and dressed in the morning!

We have an appointment with the geneticist on Friday to discuss the results of the karyotype and presumably receive some sort of diagnosis. I'm glad to hopefully have some information with which to go forward. But I also don't have a burning need to know whether he has something or what it is. I see a strong little individual who's got big things ahead of him, regardless of what Dr. Smith has so say.

We had a very enjoyable and unusually social weekend. Saturday we enjoyed a Thanksgiving meal with our expat group. I brought our play-doh which was a big winner with the kids who came. I made a ginormous salad which we forgot on our kitchen counter. Whoops. At least we remembered the cranberry jelly and oranges so we weren't totally remiss in the potluck contribution department. We were also a half hour late which I felt bad about since the invitation specifically said to be punctual. There was a biting incident followed by a very welcome nap, some fussing and dirty diapers to deal with and... well, before we knew it we were late.

The next morning we attended a special English language Thanksgiving service which we were so happy about! And in the afternoon Xochi came over to play.

A very enjoyable and satisfying weekend! We'd be doing a little better if we were sleeping more (Micah has Andrew playing musical beds every night) but it's partly our fault for going to bed just a little too late most days. Anyway overall things are good. Though we CANNOT WAIT to be with family and friends for Christmas. :)

Horizontal All Night!

Big win last night! I didn't have to get up with Josh!

Now that it's just kind of a waiting game on the food sensitivities I turned my attention back to the idea of reflux.

The doctor reminding me that arching is a sign of reflux (apparently stretching out the neck eases the pain in the esophagus) reminded me also that congestion can come along with reflux. So I turned to trusty Google and did some more research. This confirms it for me: one site I read said not to give decongestants because they make the mucus thicker. And that night I gave him the decongestant his nose was more plugged up than ever.

Some suggestions for helping a baby with reflux include left side sleeping and tummy sleeping. So last night I made sure he was on his left side the whole night (usually I switch him back and forth with each nursing request). And that took us all the way to 5am before he was too stuffed up to sleep. At that point, rather than getting up to suction his nose, I moved him so he was sleeping on his tummy, on my chest. And that did it! He was as clear in the morning as he would have been if I'd suctioned him, and we didn't have to get out of bed!

I'm VERY encouraged by this. I am more than willing to sleep like this if it means staying in my cozy bed all night long. Especially now that it's starting to get chilly willy at night.

So I'm feeling pretty confident now that he has silent reflux. And a strong sensitivity to wheat, and quite possibly a more slight sensitivity to dairy.

The next question is: what do I do about it? I didn't notice it really bothering him today, but yesterday he had a crying session of about 20-30 minutes where he was obviously having waves of pain. Do I proceed with invasive testing? Do I try reflux meds to see if they help? Do I just wait for him to grow out of it?

One remedy for reflux that I have heard is potato water. Yep. Boil a few potatoes- no skin- and then give some of the resulting Potato Water to the baby. Apparently it neutralizes the acid. It's not clear to me how much one should give to the baby, or how often. But I suppose it might be worth looking into.

I welcome any other thoughts about what else I could think about doing.

Doctor Appointments

Yesterday Josh had appointments with the pediatrician and also with the pediatric cardiologist.

Good things:

- His heart stenosis is unchanged. Yay! I was hoping and praying it would be improved, but unchanged is still good! Dr. Diaz said that it is rare for this type of problem to heal completely, but it could improve somewhat. He also said that it is much less problematic to have problems on the right side of the heart, as Josh does, than on the left side. We will have monthly appointments for the first year.
- The pediatrician immediately commented how much better Joshua's colour is, and also how much more alert he is.
- His ears, nose, throat and chest look and sound good. No infections despite the weeks of illness
- The pediatrician prescribed some decongestant drops. (I was hopeful they'd help Joshua sleep better at night, but they only bought us about 30 minutes. He was up and desperate for help to breathe at 4:45am. And now it's a cloudy day so I won't get the bedding sunned again today!)
- Joshua seemed to enjoy his sonogram. He cried initially, then quieted and watched the screen. When it was over he started crying again.

Not great things:

- Joshua hasn't gained much weight and apparently no length since last month's appointment. Dr. Flores isn't overly concerned but does want to keep an eye on it. I guess it's not surprising that Josh isn't growing too fast, since he has so many other things to spend calories on. But as his Mommy and sole source of nutrition, I sure would feel better if he were growing better!!
- The geneticist was concerned about the status of Joshua's testicles because she couldn't locate them when she checked him. Dr. Flores confirmed that they were descended at birth, but right now both are in his groin, rather than his scrotum. One is lower than the other. He said that they are "retractile testicles" and at this point it is nothing to worry about. They may descend on their own, and/or go up and down for a while. But if they don't come down on their own, he would need hormone treatments or even surgery. If they stay up there it would mean infertility and increased risk of testicular cancer.

All in all, the visits were good. I like the way both doctors explain everything so thoroughly and spend so much time with us answering my questions. I never feel rushed. I am grateful that Joshua's health concerns require only surveillance and not invasive tests and treatments and that so many of them are likely to resolve with time.

Coffee? Dairy? Reflux? Hypercalcemia? Allergies?

We continue to struggle to dig "happy relaxed Josh" out from under the pile of mystery debris.

Last week he had one, maybe two good days. Two were particularly miserable, and the rest were just not great. He still has his cold and wakes up nightly between 4:00 and 4:30am needing to have his nose cleared so he can breathe.

He has been acting the way he does when I eat wheat, yet I haven't had any wheat. So I started wondering whether he is sensitive to another food. Dairy is top of the list of infant food sensitivities and I realized that I have been eating more dairy recently, and recently he has been even fussier. At first I thought maybe it was coffee, which I have been also consuming more of lately. (Christmas Blend is available now- can you blame me?) Coffee is pretty much my only vice right now and the idea of giving it up struck fear into my heart. So naturally I am hopeful that a different substance is the culprit.

I have been off dairy for I think three days now and I have seen improvements! He hasn't been crying in the car from the moment I buckle him in until after I take him out and talk him down. Still crying, but not every second. Also he actually hung out quietly in the swing for a stretch and also on the sofa for a stretch. This morning, he was happy to just hang out in the wrap. Usually I have to be bouncing him and have the soother in as well. I was hoping that his congestion was also related, but it was actually worse last night. But I suppose there's still hope, since the dairy proteins can take weeks to completely leave my system.

Around lunchtime today he got really fussy again. Buildup of leftover dairy proteins? The oats I had for breakfast (no, please not oats!)? Reflux? Hypercalcemia? I don't know. But I was REALLY encouraged by the fantastic morning he had. He was so relaxed and soft and happy. So often he is rigid.

Mornings like yesterday I just basically bounce on the exercise ball or gingerly hold him if he falls asleep (because he has been such a light sleeper). And that is my morning. Micah watching tv, and me sitting or bouncing with Joshua. When I absolutely have to do something, like get myself or Micah something to eat, Joshua screams and wails and arches and stretches and scratches me and pulls my hair the whole time. It's exhausting for both of us.

But today was a different world!! It was amazing. Joshua was happy, relaxed, smiling back at me, making happy noises... incredible! He didn't mind hanging out in the swing for a bit while I cooked, and in the bouncy chair while I put away laundry. I got four loads of laundry washed, dried and put away, I premade lunch as well as supper (a crockpot stew that was a hit with everyone- YESSSS), and did all the dishes. It felt great.

Joshua did have two fussy stretches where it took about 30 minutes to finally calm him down. So my current theory is that either it was a tummy ache from buildup of milk proteins still in my system, or a reaction to oats, i.e. celiac. Both Andrew and I have family members who have celiac disease so it's plausible. Depending how much I feel like oats tomorrow morning, I may eliminate that, or wait to see how things go with the current no-wheat no-dairy yes-coffee diet.

The other thing I've been wanting to do is sun my pillows and duvet in case the nighttime stuffiness is due to dust in the bedding. Haven't yet because I would have to first clean the dust off whatever I'm going to put them on outside and that makes the task feel a little overwhelming. But if Josh continues to feel as good as he did today, I'll be able to get that done soon!

Sweet Josh

11.5 weeks

Joshua 11 Weeks, 4 Days

I haven't been very good at getting a weekly photo, but oh well. Also it's a little too chilly for a onesie shot. So much for good comparisons. Ah well. Somethin' is better than nothin'. I love these little overalls. I'm glad they're still big so he'll get a few more months out of them.

Little Boys

Smiles, Splashes and Silly

The other day I finally got around to hanging Eva's mosquito net. She was absolutely thrilled and Micah was very excited for her. While I was taking pictures of it, he made sure I got a shot of him and his bed too.



The kids thought Joshua might enjoy having some company in the swing. And a warm head.


Now a few shots from today:

Joshua gifted me with some awesome smiles today and I managed to catch one with the camera!

Here he is gazing up at Eva. Those three kids love each other a. lot.

I'm sure this would be harder on the Winnipeggers if the weather there weren't still unusually pleasant:

Micah is sooooo bored in the mornings while Eva is at school....

Not a Fluke

Josh just rolled over three more times! Now, the question is: can he do it when he's not mad?