Thursday, September 27, 2012

Russell is 9 months old!

My baby is growing up!  I can't believe that I only have three months to plan his first birthday party!  Ahhh!

At 9 months old, Russell:

  • Weighs 15lbs 13.5oz!  He's gaining really well and staying on his curve, although his curve is still below the charts
  • Measures 27 inches, which is in the 10th percentile!  Yay!
  • Wears size 2 diapers
  • Still fits in most 0-3 month clothes but should really be moved up to 3-6 month clothes...I just have to get around to washing them.  Blah
  • Has eight teeth (four on the top and four on the bottom) and drools a decent amount, but hasn't gotten a new tooth for a while.  The pediatrician says he's likely to lose his first tooth before starting kindergarten since they came in so early
  • Has mastered the "classic crawl," and that little wiggling bottom is just the cutest thing I've ever seen!
  • Goes from crawling to sitting to crawling all of the time while playing
  • Can crawl up stairs
  • Can and does pull himself up on everything
  • Has taken a few "cruising" steps while holding onto furniture, but only when he is very motivated to get to something that's just out of reach.  The doctor said he'll probably be walking by his first birthday, but he doesn't bounce on his legs (he keeps his knees locked when he's standing, just like Caleb did) so I wouldn't be surprised if it took him a little longer
  • Enjoys holding remotes and other electronics more than most toys.  In fact, I can't nurse him on the couch if there is a remote within sight, because it is just too distracting
  • Also loves shoes.  Especially putting shoes in his mouth.  And since Caleb is obsessed with wearing everyone's shoes around the house, there is always a shoe within reach for Russell to chew on.  Yuck
  • Follows his brother everywhere, and is super duper excited to see him after they've been apart (such as after a nap)
  • Has a grasp on object permanence--he still freaks out if I leave his sight, but he will follow me out of a room (while freaking out, of course)
  • Enjoys peek-a-boo
  • Is kind of starting to play the "How Big Are You?" game--I ask him how big he is and he puts his hands up in the air and we say, "SO BIG!"  We usually practice with him while he's in his high chair, so he often just randomly throws his hands in the air during meal time
  • Kind of waves "hello"'s a little bit hit and miss
  • Will mimic people when they cough
  • Rarely makes sounds (other than crying).  He will say, "Yayaya," "Ba," and "Ma."  But he doesn't string consonant sounds together (Bababababa) other than a few ya's, and even then it isn't in a conversational way.  We're a bit concerned about his lack of vocalization
  • Gets "cognitive development therapy" twice a month.  So far his therapist has only come over twice, and he isn't very responsive to her.  Right now we're mostly trying to get him to mimic us with actions and sounds, so she'll bang a toy against the floor and wait for Russell to do it, too.  He does mimic simple actions, but mostly he just likes to do his own thing (or do what Caleb is doing)
  • Is doing well eating solids except for a few times a week when he refuses to eat his baby cereal.  At his 9-month appointment they checked his iron levels and found that he is slightly anemic (weird) and said just to make sure he gets enough fortified baby cereal.  But he gets at least as much cereal as Caleb gets through his tube and even with bleeding in his stomach Caleb isn't it's weird.  So Russell is anemic even when he is getting at least 90 percent of the iron that he needs daily
  • Loves, loves, loves to nurse, but doesn't nurse for long any more.  I always hear people saying things about "growth spurts" for their babies, and neither of my kids has ever had a growth spurt (other than Caleb when he got his feeding tube, haha).  Russell is very attached to me, and when it's about time to nurse I can't hold him without him trying to turn around and eat.  But lately he has been sleeping through the night (YAY!), and I'm talkin' 9-13 hours straight, and when I wake up I can hardly tell that it's been that long since he ate.  So I think my supply is tapering, and he isn't able to increase it.  I hate to think that I may be weaning him soon (since he loves nursing ever so much), but I don't know if I'll have much of a choice.  The problem is this: he will not drink anything that doesn't come from my breasts.  Seriously.  We've been trying to get him to take a sippy cup, a bottle, an open cup...nothing.  And although his mouth is still moist, his lips are dry.  And he only has about four wet diapers a day, one of which is very wet and three of which are barely wet at all.  I just don't know what we're going to do about this
  • Is always interested in closing the baby gate for some reason
  • Loves to dance to music.  Seriously one of the cutest things I've ever seen
  • Gives the sweetest, drooliest kisses :)
  • Has an oral fixation, I swear.  He doesn't like to teethe on toys, he likes to hold them in his mouth while he's playing with other toys.  Most of the time he can be found crawling all around the house with a toy held in his mouth
  • Has a killer pincer grasp, but doesn't always know when it's more appropriate to grasp things with his whole hand rather than his pointer finger and thumb.  Kinda funny to see him try to pick up something big with his pincer grasp!
  • Absolutely freaks out when he hears another baby or child cry or whine.  He cries inconsolably for many minutes and is then on edge for many minutes.  If he hears another cry or whine, it starts all over again.  He had an entire waiting room at the GI doctor's office cracking up when a little boy clear on the other side of the room would barely whine for just a second.  Three times that little boy whined, and three times my baby boy broke down.  It happens in the mother's lounge at church almost every week.  He doesn't react one bit to loud noises such as the blender or vacuum, but he is very, very sensitive to the cries of others.
  • Is all together a very content and happy baby!  As long as he's not hungry or tired, he's super chill.  He doesn't mind just sitting on my lap, playing with a toy and watching what's going on around him.  It's nice (and weird) to have a kid who is able to sit still.  :)

Saturday, September 1, 2012

Crazy Doctor Week: Caleb's Medical Status

Last week, on Friday, Nate and Caleb went with Grandma and Auntie to the Brigham City Temple open house.  Russell and I were planning on going with, but since he was sick we stayed home and had a pajama day.  Nate was really looking forward to showing Caleb the Temple, since he loves looking at pictures of them, singing the Temple song, and gets so excited every time we drive by the nearest temple.  So they went to Grandma's house for lunch, after which Caleb threw up.  It didn't seem like a big deal, because he has been throwing up once a day lately.  But then he fell asleep in the car, and it wasn't even nap time yet!  Then, once they were in the Temple, he wanted to be carried everywhere.  This was clearly not the Crazy Cal that we are used to.  After touring the first little part of the Temple, they headed upstairs.  While close to the lobby, Nate recognized the warning signs and somehow communicated to the tour guide that Caleb was going to throw up.  She pointed to where the bathroom was and tried to help him over to it, but Nate knew they only had seconds to get to a "vomit-safe spot" and between him and the bathroom was carpet.  [You may not think much of that small fact, but when you deal with vomit throughout your house on a regular basis it sure makes you glad that the majority of your house is hardwood floors and/or laminate.]  So, Nate rushed to the nearest spot of tile, which thankfully was very close, and, being the wonderful hero that he is, sacrificed himself for the sake of the beautiful, new, clean temple.  Yes, he caught most of the vomit on his white church shirt, although of course some of it landed on the tile.  He was covered.  And he threw away that shirt when he got home.  No point in trying to clean it, he said.  It was a lost cause.

So, Caleb and Nate had to spend the next little while waiting for their tour group to get back before they could go, and then they had to spend the next hour in the car in their vomit-covered clothes.  Caleb fell asleep in the car again, and once they got home he dry heaved many times.  We put him on his feeding pump running clear gatorade into his stomach at 45ml/hour all night.  He slept for 15 hours!  He normally sleeps for 13 hours.  When I got him up, I detached his pump and he fell asleep on the couch, which he hasn't done in probably about a year!  So I thought to myself, "Self, I'm going to give him a few ounces of rice milk to see if the extra nutrients and calories, although gentle on his stomach, will give him some energy."  So I hooked up his extension and "vented" his stomach (letting his stomach contents into the extension tube; we do it to get any air out of his stomach and to check if he is digesting his food fast enough) and what did I see?  Blood.

I've seen specks of blood in his extension tube before, which can be attributed to irritation, but this looked like diluted coke.  The blood, paired with his symptoms, was very concerning, so we packed up right away and dropped Russell off at Grandma's and Grandpa's and headed straight to the Children's Hospital.  [We have learned never to take a complex child to the local Emergency Room.  They are really bad at putting IVs into dehydrated children's veins and they never seem to know what to do if the answer isn't obvious.  And they don't have access to GI doctors.  So the Children's Hospital it was.]

We got there and Caleb was so brave.  He enjoyed "I Have a Dream" from Tangled while they put his IV in.    They ran the regular blood tests and everything came back normal except for his blood sugar.  A "healthy" blood sugar level is 70-100, but Caleb's was at 40!  So they immediately gave him sugar water and a few hours later checked his blood sugar again.  It was at 68, so they gave him more sugar water and called it good.  His blood pressure was on the low end of normal, which was slightly concerning to the doctors.  They decided to admit him to the hospital based mainly on his appearance--he was so, so lethargic.

He had retched many times that morning, but after being admitted he was able to keep food down.  We put him on rice milk through his pump and he slowly got better and better.  By the next afternoon they discharged him and we went home!

They were saying that it was most likely a virus that made him throw up, but since he didn't have diarrhea (in fact, he was constipated) they said that the virus most likely caused temporary gastroparisis, which is where the gut literally becomes paralyzed.  They said that the blood must have been from the irritation of throwing up so much and the low blood sugar was from not being able to keep much down (although he kept down over 20oz of gatorade throughout the evening and night before we went to the ER, which should have helped his blood sugar, but didn't).

But I'm not buying it.  It's normal for him to be constipated to the degree which he was, and although recently it was normal for him to throw up once a day, in the past it was completely normal for him to throw up three times a day.  And he never had blood in his stomach or problems with low blood sugar (that we know of).  And no one else in our family caught his "virus."  I think it was all related to Caleb's digestive problems, most likely the mystery that causes him to vomit so much.

To me, the symptoms mimic FPIES (Food Protein Induced Entercolitis Syndrom).  The only problem is that we micromanage Caleb's diet to a very, very strong degree and we know that there is no way that he ingested a new food that he could have reacted to.  So it's a mystery, once again.

So, we scheduled a follow-up scope with the GI doctor.  But just a day after discharge, Caleb caught Russell's cold.  I gave him the only benadryl that I could find without food dye, but it turns out that one of the inactive ingredients is natural banana flavor.  So, although I only gave him one dose, it is best to wait a few weeks for any eosinophils that it may have caused to be out of his system before we scope.  And he can't have such respiratory problems if he is going to go under anesthesia, so we will have to wait anyway.  Hopefully we won't have to wait more than two weeks.

While Caleb was still suffering the aftereffects of his vomiting/bleeding/blood sugar/blood pressure problem and simultaneously dealing with a horrible cold, I have never seen him so sick.  He was pale.  He had no energy.  He couldn't even talk fast.  He didn't torment the cat or the baby.  He got skinnier by the day.  He would wake up many times each night coughing, crying, "Daddy/Mommy, hold me."  I would lay awake at night, trying to prepare myself to see how wasted away he would look the next day.  I can honestly say that I've never been so worried for his life.  Not even when he was a tiny preemie on life support.  I knew then that he would get better, but now I just don't know what the future holds.  Will he always vomit?  Just how much weight can he lose?  He has only gained 1lb 5.5oz in the last nine months.  Two months ago he weighed 9.5oz more than he does now.  He only weighs 22lbs 6.5oz, despite all of our efforts to get him to gain weight.  We have now talked to three dietitians and they all say we're doing a great job.  What comes next?  How long will it take him to gain back all of the weight he has lost?  I wish I knew.
This was Caleb a month ago, when he weighed six full ounces more than he does now.  I want to cry every time I look at this.  It breaks my heart every time I see him without his shirt on.

Thankfully he seems like his old self today, a whole week after his hospital stay.  He still has a cold, but his color and his energy are back.  I missed my Caleb.

Now we need some answers, and maybe a new plan.  I can't live with the stress of it all, and Caleb can't weigh less than 23 pounds forever!  We have looked into what it will take to get him seen by a specialist in Denver, and as soon as I can muster the energy and time, I hope to get his medical records sent there for them to review.  But that's going to be quite the feat with his medical history.  Whew!  Wish me luck.  We need to get this boy feeling better!

Crazy Doctor Week: Russell's Medical Status

Last week our 3.5-month wait for Russell to see the GI specialist was over!  He is now in the "system" and is a patient of the same GI specialist that we use for Caleb.  Since she knows us rather well (yeah, I'm pretty sure Caleb is a very complex case), and she knew we were coming (I told her the week before when talking to her on the phone in regards to some of Caleb's problems), she was very sad to see that we were experiencing problems with our littlest little one.

One thing that I love about this GI is her notes.  She gives me a copy of everything that she observes, thinks, and does in regards to my children.  Here is what she had to say about Russell, straight from her notes:

Rare vocalization
Not growing well
     needs to eat more
     needs to sleep more
     lots of allergicky responses to food intro.
     social, chatty, muggy, laughing
     all physical observations fine except rough skin and bloated (yet soft) abdomen

Rx: Cyproheptadine: increase appetite, increase sleep, decrease allergic reactions in the gut


So, Russell is now on Cyproheptadine twice a day.  Caleb has been on it two separate times now, once as an appetite stimulant and once in a (failed) effort to control nausea and vomiting.  But those are just side effects--the drug was originally used as an antihistamine.  It is no longer used for that very much because increased appetite is a common side effect (and most people don't like that, but for my boys--YES!).  And nowadays antihistamines are targeted to effect more specific parts of the body--like the sinuses, etc.  But this one is just a general antihistamine, so it will effect his gut.  So, if Russell doesn't have an eosinophilic disorder, and he's just reacting in a general allergic way, then this medicine may very well help him.  But eosinophilic reactions aren't like regular food allergies, because your body doesn't react with histamines.  It reacts with eosinophils, which are a white blood cell.  In that way, people with eosinophilic disorders don't have "food allergies" at all.  They have food "reactions"....

Anyway.  Since being on the medication, Russell has tried two new foods: bananas and beef.  I'm thinking about giving him strawberries or corn tonight to see what happens.  So far, he hasn't had any sorts of reactions to anything since being on the medicine, but it's hard to say if he would have had reactions anyway. I'm supposed to call the doc with a report next week.

And then, shortly after leaving the doctor's office, I noticed that Russell felt warm.  When we got home I took his temperature and he had a fever of 102*!  Poor kid was getting sick.  And for three days he slept straight through the night, when before he would wake up 2-3 times each night.  A little silver lining to his poor, sick, lethargic self.

By the next morning he was so congested, unable to eat, and lethargic and his fever was up to 103.2* even with tylenol, so I took him to the pediatrician.  Other than losing an entire POUND!, everything checked out fine and they sent me home with a mental list of things to watch out for.  After his nap his breathing was so labored and he had even less energy that I was worried about his oxygen levels, so I took him back to the pediatrician for a second time that day!  They gave me the same schpeal, and sent us home.  Thankfully he kept breathing throughout the night and the next day he was a little better.  Whew!  He has now gained back pretty much everything that he lost, thank goodness!  And he is only waking up once in the night, which I can live with.  :)

Part II of the crazy week, Caleb's Medical Status, is to follow.