Grateful for Sleep!

I've been sitting on this blog post for awhile, almost afraid to post it because I don't want to jinx the unqualified success of LB's transition to the big boy bed.  Now that it has been nearly 3 months and he's still sleeping through the night -- yes you read that right -- HE IS SLEEPING THROUGH THE NIGHT!!!! -- I thought it would be safe to post this.

Just two nights before Thanksgiving, LB figured out how to climb out of his crib.  He was 20 months old at the time, a few months younger than when his big brother accomplished this feat, but in our house, once the baby can climb out of the crib, the big boy bed becomes a necessity.  I'd rather throw some pillows on the floor next to the twin bed than have any crib-climbing related injuries on my conscience.

We weren't exactly prepared for this to happen so quickly, but we decided to roll with it.  Thankfully, we already had the twin bed and mattress he would be using.  We just needed to move that into his room, do some rearranging and get him a new dresser.  The process started first thing in the morning.

LB was pretty excited about the whole thing, especially the disassembly of his crib... 

He helped us carry the crib pieces out of his room.

He cuddled up with his big brother for a little snuggling on his new mattress.

And he was the first one to climb into his bed once the new sheets were on (I wanted to decorate his room in a sports theme and I hit the jackpot when I got the very last set of twin-sized flannel sports sheets at Kohl's).

He immediately snuggled onto his pillow and smiled. 

That night, we put him to bed and he did great.  He was anxious to sleep in his new bed and he slept all night long. Didn't wake up once and didn't get out of bed at all.  I woke up refreshed and rested and only a little bit nervous about how long he had slept (11 hours, which is totally within his 10-12 hour limit).  He has proceeded to sleep through the night just about every night since. 

Sometimes he'll stir at night and yell out for me.  I'll go in and untangle him from his sheets or re-tuck him in and he'll drift right back to sleep.  Usually, he says "thank you, Mommy" when I do.  Most nights, he just sleeps, though.  It's incredible. 

We've waited nearly two years for this to happen and now that it has, I feel like we've reached another milestone in our MCADD journey.  It is nice to know that he's getting a good night of rest because I know his body needs it.  It's nice to be able to put him to sleep and not worry about sleeping through a feeding alarm because I'm so tired that my body won't listen to them anymore.  The whole family is getting rest and we are one happy household now that we are meeting our sleep quotient.  We're even making up for the lost sleep of the last two years.  Hooray!!

Fifteen Months

It has been a few months since I've done a monthly update, but there's so much going on in LB's life right now, I couldn't help but give a little update.

Other than a couple typical toddler runny-nose incidents that were snotty and messy, but didn't seem to bother him one bit, he has remained 100% healthy.  Hooray!

We're starting to get a lot more words.  I read a few articles that mentioned children with MCADD can have speech delays and since LB wasn't really talking at all, I was starting to wonder whether I should ask the pediatrician about it.  Then, all of a sudden, we went from a vocabulary of "this," "that," "yes," and "daddy" to a whole lot more words -- ball, catch, dog, juice, night-night, mommy (hooray!!), kiss, and probably a few others I'm not remembering right now.  In any event, I'm a whole lot less concerned about his speech than I was a month ago. 

He is definitely a boy on the move!  He has been walking since January, but is very adept at it now.  He can walk/run easily on all surfaces and doesn't trip and fall all that often anymore (this makes me happy because one of my least favorite things is when my boys face-plant on the concrete - it just makes me cringe to watch it and not be able to stop it).  He is also discovering climbing and can successfully work his way up onto all sorts of high furniture - the kitchen table, the couch, the beds.  He has also figured out that if he can't get up onto something, he can always go grab the step stool from the bathroom (the one his older brother uses to reach the sink) and set it beside the item he'd like to climb -- voila! 

His favorite toys right now are all things sports. He loves all types of balls -soccer, foot, basket, base, bowling, golf, etc. - along with all the long sticks that accompany them.  He can swing a mean golf club with pinpoint accuracy on your shin.  He can play catch with us for 15 minutes at a time and not tire of it one bit.We are convinced that he is going to be our sporty kid because he is literally obsessed with this stuff.  Thankfully, I've been very encouraged by stories of families with older MCADD kids who are successfully able to participate in sports, so the thought of him playing a sport doesn't make me as uneasy as it used to.

He also loves dancing and will bop along to music.  He loves books and brings them to us one after another, happily pointing at the pictures and nodding along to the parts of the story that he apparently agrees with most.  He gives the most wonderful drooly open-mouth kisses while saying "muuuuaaa!" that absolutely melt my heart.

With all of his activity, I'm very grateful that he is eating well and enjoying a wide variety of food. One of his favorite meals is our family's tradition of Saturday morning oatmeal pancakes. He also loves things like cottage cheese, apples, PB&J, pineapple, macaroni and cheese, butternut squash, meatballs, just about any recipe for chicken, tortillas, hummus and lots of other fruits, veggies and grains.  

We've figured out a good bedtime snack system that's working pretty well.  Since our dinnertime is usually pretty close to bedtime, it was hard for us to get him back into the highchair for a sit-down snack so soon after dinner at a time when he'd much rather be romping around with his big brother.  So, now we're giving him a sippy cup of whole milk and a snack cup about a half hour before his bath that he can carry along with him during the romping. The snack cup contents vary, but it's usually some kind of whole-grain cereal or crackers (cheerios, graham crackers, peanut butter sandwich crackers, belvita breakfast wafers, etc.).  He'll drink and snack pretty happily, but at the point that he starts spitting the crackers out, we know that he's full to the brim and we don't force him to eat any more. However, we will hold onto the sippy cup of milk and let him drink that as we're reading his bedtime stories (the last step of our bedtime routine before lights out). 

We have officially weaned him off of the bottle during the waking hours, but he will sometimes have a small 4 oz bottle of toddler formula when he wakes up hungry at night.  During most night wakings, he will soothe himself back to sleep within a minute or two, but on the nights where our evening routine was a bit off (which happens to every family from time to time), or nights that we know he didn't eat as much of his dinner and/or bedtime snack as he normally does, we'll happily mix him up a quick bottle when he wakes (we keep the can of formula in our room along with a pre-filled bottle of water). If his fussing lasts longer than a minute or two, it's usually cured quickly with a small bottle. Sometimes he'll drink it all and be satisfied and sometimes, he'll only drink a few ounces before pushing it away and snuggling back into sleep.

Sleeping has really improved in the last few weeks, too.  About a month ago, he had slept through the night a total of 5 times, but now he's sleeping through the night much more often - at least 2-3 nights per week.  He's been working on cutting some molars, so that might actually be factoring into the sleep disturbances more so than the poor sleep habits we've established through his first year MCADD feeding schedule.  I have friends with children of similar age (not affected by MCADD) who are experiencing similar night restlessness due to teething, so it makes LB's sleep seem much more "normal."   

All in all, things are going great and we're excited for all the fun we'll have this summer!

Sleep Update

Since the last update, LB has slept through the night two more times -- a total of 3 times in 2 weeks!  Each time, it has gotten easier as I have become more confident that he is, in fact, OK!  I haven't been waking every few hours out of habit.  I'm actually sleeping through the night right along with him - something that we haven't done for more than a year (once you add in those last few weeks of pregnancy when your bladder won't allow you to sleep through the night, it's probably more like 15 or 16 months since I had a full night of sleep - wow!).

I don't want to jinx anything, but the fact that within one month of getting the green-light to allow him to sleep through the night, we have already had 3 full nights of sleep is pretty cool.  I'm excited to see how things go in the next month.  I will keep you updated!

10 Long Hours

He did it.  He slept for 10 straight hours last night.  He was a bottomless pit all day yesterday, polishing off an entire slice of french toast for breakfast, a whole slice of pizza for lunch along with 1/4 of a breaded chicken breast and probably two full adult servings of butternut squash at dinner, in addition to other fruits, veggies and snacks throughout the day.  He ate graham crackers just before his bath at 7:30 and he drank 8 oz of whole milk at 7:45 as he was drifting off to dreamland.  It had been a busy day of playing with his big brother and building snow forts in the back yard, so we knew he was tired and we knew his belly was full.  Usually, he fusses a little when he's sleeping.  We'll hear him cry for 20 seconds and then he's quiet again.  Not last night.  We didn't hear a peep all night.  He was one tired little boy!    

I woke at 4:18 a.m. and did the math for how long he had been asleep -- 8.5 hours.  Then, I wracked my brain to try and remember if I had given him a bottle -- nope, I was sure that I had been in bed all night and hadn't sleep walked through a feeding.  Was he ok?  Should I go check on him?  Maybe I should go wake him and feed him...just in case?  I layed in bed awake for the next hour and fifteen minutes reciting the doctors words to myself over and over -- he can safely go for 10-12 hours without eating now, he'll be fine.  I fought the urge to go and wake him.  Trust.  Trust.  He's fine.  He's just sleeping. 

My husband's alarm went off at 5:30 a.m. and his first instinct was also to inquire about LB's night.  Did he really sleep all night?  Wait, how long has it been?  Do we need to go wake him up?  We did the math together and, realizing that it hadn't even been 10 hours yet, reassured ourselves together that he was fine.

Finally, at 5:55 a.m., he started to cry.  His cries are starting to be less crying and more calling out for me.  He was alternating between crying and yelling "ah-mah, ah-mah" (which I think is his way of asking for his mommy :-).  I went in and made him a 6 oz bottle of formula. It was probably the fastest, I've ever mixed up a bottle in my life.  As soon as the bottle hit his lips, he relaxed, sighed and settled back to sleep.  The bottle disappeared in an instant and he continued to sleep in my arms with his little head cradled against my shoulder.  It was a relief to know that he had eaten.  It was a relief to hold him in my arms.  This sleeping for 10 hours at a time thing is going to take some getting used to.

We would have woken him a little after 6:00 a.m., which is our usual work-day routine, but he woke up a little before that.  Even so, I think sleeping from 7:45 to 5:55 counts as sleeping through the night.  His first full night of sleep! 

Metabolic Appointment

We just had our one-year appointment with the metabolic clinic and in many ways, it felt like a victory celebration.  I remember at our very first appointment, they told us that the first year would be the most difficult, but that LB would be more and more like a "normal" kid once he reached that milestone.  He would be able to go longer between meals as his body grew and matured.  He would be able to sleep through the night.  He would be able to eat on a more normal schedule (instead of every few hours around the clock). All of this is true now.  When he is ill, we still might need to wake and feed him, but when he is well, we were given the green light to let him sleep for 10-12 hours at night (provided he eats well during the day and has a hearty bedtime snack).

His metabolic specialists are not recommending any special diet for LB.  They did give us a great list of healthy bedtime snacks that I will post later, but other than that, we were told to feed him a normal, age-appropriate diet.  Apparently, they used to recommend a low fat diet for children with MCADD and refer them to a dietician, but they don't see a need to anymore. They said he could transition from formula to milk and didn't need to move into a toddler formula for any period of time beforehand. 

I have read a lot about children with MCADD being given cornstarch in milk as a way to maintain blood sugar, but when I asked about it, they also said it was unnecessary for LB.  They mentioned that cornstarch is often recommended for something called "brittle MCADD" where children with MCADD also have an on-going issue with low blood sugar.  LB doesn't seem to have any issues with blood sugar, so as long as he's eating normally, there wouldn't be a need to dose him up with cornstarch for a blood sugar boost.  We also, of course, still have the polycose in the cupboard which we can use to introduce additional sugar to his diet during times of illness.

They are doing some bloodwork to check his carnitine levels (which they do at every appointment) and they will let us know the results.  If it is low, we may need to supplement him with oral carnitine, which we already have on hand to use during times of illness.  We should know that within the next week.

Speaking of bloodwork, we finally got around to talking about my acylcarnitine profile results, too. Everyone in the family had a acylcarnitine profile performed shortly after LB's birth to confirm that no one else in the family has MCADD. My husband's bloodwork and our older son's bloodwork came back stone-cold normal. Mine came back with two abnormal results - an elevated C4 and C8. They told us that it wasn't MCADD, but I kept forgetting to ask at our other appointments and I was still curious what it might be (it just seems strange that such an unusual bloodwork panel would come back abnormal for someone who is seemingly healthy, but who has a child with MCADD). They surmised that it may be indicative of my carrier status, but that it wasn't anything to be concerned about. It definitely wasn't MCADD.

We spent quite a bit of time talking about genetics at this appointment, too.  The doctors inquired whether we were planning to have more children and at this point, we're just not sure.  We think we may be done, but there is what we keep referring to as "that nagging 1%" chance that we might try for #3.  They told us that there were a few options for pre-natal testing to diagnose MCADD.  We could opt to do in-vitro fertilization and select only the embryos that are not carriers of MCADD for implantation or we could conceive naturally and take our 1 in 4 chance that our next child would be affected by MCADD (and 2 in 4 chance they would be a carrier or 1 in 4 chance that they would be neither affected nor a carrier).  If we conceived naturally, we would be able to test for MCADD using an amniocentesis or we could wait until after birth to conduct a blood screening.  If we waited until after the baby was born, they would recommend that we feed formula and do the blood test immediately to make sure that the baby would be safe until we knew his/her MCADD status for sure.  We would not have to wait for the traditional newborn screening test results to find out, although the screening would still be conducted.

We also got the results of LB's DNA analysis.  They screened for only the common mutations and found that LB has one common mutation and one uncommon mutation that they were unable to locate within the bounds of the DNA mapping that they performed.  We would need to talk to our insurance company to discuss the cost of a full DNA analysis to find LB's other gene mutation and it could be pretty expensive.  Apparently, insurance companies tend to balk at paying for this level of testing since it doesn't change the course of treatment, so it would likely be a hefty out-of-pocket expense for us.  We agreed that we would not pursue the full DNA analysis at this time, but that maybe in 20 years when our kids might start thinking about kids of their own, they may choose to pursue that more extensive testing to determine 1) whether our oldest son is a carrier and if so, of which mutation and 2) what the uncommon mutation is for LB.  At that point, DNA mapping will probably be a whole lot less expensive, too.

In all, it was a great appointment.  It's always great to hear that your child is doing well and developing completely on schedule.  Considering how worried we were the first time we set foot in the metabolic clinic one year ago, this appointment was a breeze.  We'll only need to be seen every six months going forward (another benefit of LB getting bigger and out of the critical and worrisome first year).

Ten Months

Here is our happy, 10-month old boy!

 

 

Despite a trying few weeks, he is still having fun and doing great.

Although I must say that it is getting much more interesting to take these monthly photos now that he is so interested in my signs...

Here are some milestones from the last month:

• He is learning to communicate with gestures and body language. He can shake his head from side to side for no (as in "no, Mommy, I don't want you to spoon any more peas into my mouth"). He can also bob up and down for yes (as in, "yes, Mommy, you are quite silly and entertaining trying to get me to eat my dinner"). 

• He is working really hard on forming words. We get a lot of "lalalala" noises now (accompanied by sticking out his tongue) plus he is also trying very hard to say either Daddy, down or dog. We're not quite sure yet, but it is a definite word attempt.
 
• Food has been a bit of a battle recently. The pediatrician recommended we keep him on soy formula in case the gastrointestinal upsets of late have a milk allergy linkage (he still thinks it's viral, but just in case) and we're avoiding all dairy for a bit until allergies are ruled out. He is OK with the soy formula, but turning down pretty much anything that comes on a spoon. He would much rather feed himself with his fingers, thank you very much. So, we've been doing lots of steamed butternut squash, steamed broccoli and cauliflower, steamed carrots, noodles, canned fruit, bananas, some avocado and even some very finely chopped chicken breast and fish. Dinners are a messy, messy affair, but sometimes learning how to feed yourself isn't pretty, I guess. Good thing we have the dog to keep the floor under the high chair clean.
 
• It's also a good thing he has more teeth to chew all of these new foods. He sprouted the two top left ones just before the new year and has the two top right teeth on their way shortly. One of them is just starting to poke through. We're noticing that he's always feeling around his mouth with his tongue, so I'm guessing that he's pretty intrigued by this whole teeth thing, too. 

• He is quite stellar at getting from place to place. He crawls as fast as can be and is also very proficient at cruising. He can navigate an entire room with just barely one hand holding onto the furniture or walls. Put him behind a walking toy or a laundry basket and away he goes on two feet without batting an eye. He will even walk with us holding onto only one hand, although he prefers when we let him hold both hands. He is experimenting with taking steps on his own without holding onto anything, but so far we've only caught him doing this a handful of times -- once he forgot to hang onto the couch and took two steps toward me before realizing he wasn't hanging on (once he realized this it was like a looney toons cartoon where the character realizes he's run off a cliff and immediately starts the plummet - in this case, he dropped to his bum to crawl the rest of the way). The other time, he wanted to get from the couch to the loveseat and made the 2 ft stretch between the furniture after calculating in his mind whether he could do it. He was quite pleased when he did. 

• One of his best movement-related stories is his love for tackling his big brother and his Daddy whenever he catches them laying on the floor. We'll hear him giggle and then it's off to the races before he's crashing onto someone with an enormous smile on his face. He even tackled the dog a couple days ago (she got up and moved to the other side of the room).
 
• He can stand on his own for about 10 seconds at a time, but doesn't seem inclined to stand for much longer. I think it's just that he's too impatient and wants to get onto the next thing instead of standing still.
 
• I'm getting a little worried about his weight gain since he is essentially the same weight now as he was at his 9 month appointment, but with two major stomach bugs and 5 days in the hospital this month, it was probably inevitable that he would lose a little weight. Fingers crossed that we stay well for awhile and can get him moving in a good direction again quickly.
 
• We are finally getting some relief on the sleeping front. I don't know if it was the comfort of having me lay next to him every night while we were in the hospital that taught him that sleeping was actually pretty nice or if it was the cozy new flannel crib sheets we bought for his bed or if he's just been too tired to stay up all night protesting sleep after all that he's been through these last few weeks, but we have actually been getting rather consistent 6 and 8 hour stretches of sleep at night - which is incredible compared to where we were about 6 weeks ago when he couldn't sleep for an hour at a time without needing someone to come comfort him. Fingers crossed that this continues on a good trajectory, too!

Reflux

We are now giving LB baby antacids that are allowing him to eat and sleep more comfortably at night. He was having real trouble eating and sleeping after his hospitalization for the stomach bug. I was wondering if it was teething again or if it was becoming behavioral for him to want me to hold and rock him all night long, but when he started the ear-splitting shrieking everytime I tried to put a bottle in his mouth or attempted to lay him down, I got concerned.

A trip to the pediatrician revealed that he likely has a bit of acid reflux as a residual side-effect from the stomach bug. Basically, his pediatrician thinks his whole GI tract was inflamed by the virus and is still trying to recover. All babies have reflux to some extent, but our baby probably just needs a few weeks of antacid treatment to get his tummy back to normal. Day one of the antacids and he had the best night of sleep he's had in weeks! That was on Saturday and it's gotten slightly better each night. Let's hope it continues and we can get off the antacids next week (it is rather challenging to get him to swallow two different medications three times daily...he has already taken this opportunity to learn how to blow raspberries at me so I am usually covered in sticky beads of medicine).

Metabolic Appointment

We had an appointment scheduled with LB's specialists at Children's Hospital for the last week of October. It had been on the calendar since August, but it just so happened that it ended up being the day after he was released from the hospital, so the timing was pretty good.

We talked to his doctors briefly about his recent illness and how things were going (very well, by the way). They assured us that whenever he isn't feeling well and not eating, the safest thing to do is to give him IV fluids. His weight was down a bit (16 lbs, 8 oz) from where it normally is in the 50th percentile, but they said it was likely due to the illness and that they would expect him to make up for lost ground rather quickly.

The real purpose of the appointment was to get our next set of feeding instructions for him. Up until this point, we had been feeding him every 3-4 hours throughout the day (sometimes forcing him to eat if we looked at the clock and felt it had been too long) and giving him one longer 6-hour stretch of sleep at night before setting the alarm to wake and feed him. Based on his weight of almost 8 kg, we could now let him sleep for 8 hours at night and they told us that we should start treating him more like a "normal" kid during the day (i.e. feed him when he's hungry, not based on the clock). The goal by the time he is a year old is for him to eat like any other kid during the day (breakfast, snack, lunch, snack and dinner) with the addition of a hearty bedtime snack and for him to be able to sleep for 12 hour stretches at night.

Although that sounds simple, it will definitely be a mindset shift for us. I feel like we'll always be looking at our watches and trying to keep track of when and how much he's eating just because we know that he needs to eat consistently in order to stay healthy.

The 8 hour stretch at night will also probably be tough at first. He hasn't been a great sleeper at all lately with the whole teething thing, then the illness, then the hospitalization. Add to that our forced middle of the night wakings that we've been doing his whole life and I'm starting to wonder if we're conditioning him to wake and eat throughout the night instead of conditioning him to sleep for progressively longer stetches on his own. I know that lately I spend more of my nights in the rocking chair in our nursery than in my own bed. I don't say that because I'm complaining. I just say it because it is fact. I don't mind it one bit. From the day that we found out about his MCADD, I feel like it is a privilege to wake him and hold him in the middle of the night as I feed him. We are so very lucky to have him and so very lucky that the hardest thing we have to do to keep him safe is set an alarm and feed him every few hours at night. There are plenty of kids who require far bigger health interventions than he does and I never lose sight of how fortunate we are that 1) we know he has MCADD, 2) we know how to keep him safe and 3) that we have him in our lives at all. Before newborn screening, kids with this deficiency were in grave danger because they were outwardly healthy and there was no way to know about this problem until it was too late. In any event, sleeping for 8 hours sounds great, it's just going to be a bit of training for ourselves and for him to get to that point.

So, the visit went well. The doctors are very pleased with how well he is doing and how well he is recovering from his illness. We go back to see them when he is a year old!

Seven Months

Well, here we are again, another month later and a baby who just keeps growing and growing!  I swear that he is going through all these milestones WAY TOO FAST!  He has the incentive of wanting to keep up with his big brother, so he's hitting the milestones much earlier than the little man did -- sometimes a full 3 months before him!

He is a pro at crawling and can get wherever he wants to go very quickly.  I love how babies crawl toward things that they are excited about -- panting and giggling and slapping their hands on the floor as they go.  LB gets very excited about crawling toward the dog food dish and our master bedroom shower.  Whenever he is on the floor in the vicinity of those two locations, the giggling  sets in and he is soon plunging his little fists into kibble (we always catch him before he attempts to eat any) or squealing with delight in the shower as he listens to his echo.

In other movement-related milestones, he is also pulling up.  He pulls up on practically all pieces of furniture, his toys, his parents and even his bathtub.  Sometimes while he is standing next to something, he is also reaching for toys and he forgets to hang on.  He isn't exactly standing by himself yet, but he isn't exactly holding on for dear life either.

He has continued to be an excellent eater and has now taste-tested just about every flavor in the baby food aisle.  He is also starting to get the hang of some finger foods and he happily attacks puffs and cheerios with gusto whenever he is in his highchair.  He's even starting to get the hang of using his hair as a napkin (I wonder if his big brother taught him that?).

The only slight hiccup that we have run into is that his sleeping has suddenly become very poor.  He had a bit of a cold the last week of September, so the congestion was keeping him awake.  I spent many nights sitting up with him in the rocking chair so that the elevation of his head could keep the congestion at bay, but once the cold cleared up, he continued to want me to sit with him all night every night.  While I love nothing more than holding a sleeping baby and I still feel so thankful for LB that I hardly bat an eye at any of his nighttime needs (food or snuggling), I know that he needs to be able to sleep on his own, too.  I do not subscribe to the "cry it out" method, so there have been many nights with minimal sleep for me.  I was just starting to worry about his newfound night restlessness when I realized what was happening.  He was getting teeth.  I got a glimpse of his bottom gums and sure enough there is an outline of two tiny teeth on the bottom.  I expect they will pop through any day now.  In the meantime, Tylenol has been helping, as has the knowledge that this is likely only a small bump in his usually peaceful sleeping.

He has many vocalizations now, including something that sounds like DaDaDa and lots of consonant sounds.  He squeals with greater inflection than ever and enjoys babbling with me and with the dog believe it or not (she is a very patient audience because he is usually grabbing great handfuls of fur as he "talks" to her and she doesn't mind one bit -- she is SUCH a good and gentle dog).

Although that toothless smile will soon be a thing of the past, I am still madly in love with his baby grin.  What a fun and happy baby he is!