Thursday, May 18, 2017

Graham's Cranial Journey: the beginning

As many have noticed, Graham has a misshapen head. It was something that was pointed out by multiple people, that I myself noticed early on (around 7 weeks), and something that no doctor agreed was an issue until just barely.

This is my documentation of this frustrating situation, not so much to document but moreso to vent. So if you don't want to read a rage filled post, then stop reading.


Pre-Helmet backstory:
Beginning around 7 weeks I noticed Graham's head was crooked for lack of a better word. For anyone who doesn't know, I work at the Pediatric Genetics Division at the University of Utah. We frequently have children referred to us that have a secondary diagnosis of plagiocephaly or brachiocephaly. I am fairly familiar with recognizing it and didn't feel I was projecting this on my child. However at his 2 month Well Child Check (WCC) our pediatrician at the time waved me off and said it was very mild and it had time to correct. Plus it was too early to treat it even if that was the recommendation. So I was fine with that, until right before his 4 month WCC when I took pictures from above, side view, and frontal and showed them to one of my geneticists who also remarked that it did look abnormal, he was plagiocephalic (he had a distinct bump on one side of his forehead making it look markedly abnormal) and should go see Dr. Siddiqui the regional expert in craniofacial surgery for evaluation.

At our 4 months WCC with a new pediatrician (we switched due to insurance issues) I informed him of my division doctor's recommendations and he said 'if I wanted to pursue that he was fine with that, but it was still early for a helmet'. I decided to go forward with it.

For whatever reason although my appointment was scheduled with Dr. Siddiqui, his fellow instead came in and saw us. He examined Graham and told me that it was mild, that he didn't feel he needed a helmet at this time - it was too early for treatment anyways - but to bring him back in at 9 months (more on this later).

A this point I decided I was projecting my own fears and concerns onto my child inspite of multiple individuals in our neighborhood, family, and even random strangers remarking on his head shape. It's very hard when 100% of the population that you see in a doctor's office is only 1% of the general population to keep your fears in check (this is also why I had genetic testing done while pregnant with Graham to verify common genetic disorders were not present to give me some piece of mind). And of course, I'd been dismissed by two pediatricians at this point, and one fellow specializing in cranial-ortho surgery. Surely I must be seeing an issue that wasn't an issue.

And then due to us strongly disliking the treatment we received at the second pediatricians office I performed a search for a new one. Someone close-by, experienced, and in-network with our insurance. We found a great doctor who we scheduled Graham's 9 month WCC with. Prior to that though he got a terrible sinus infection that hit both Jared and Hilton. So we took him in to be evaluated by this same doctor. Completely unprovoked and without me mentioning it she pointed out his misshapen head. 'Finally! Someone who sees what I'm seeing!' I thought. She said that if it didn't look better by his 9 month WCC that he would need to be evaluated by a specialist. I left it at that thinking 'surely, he won't look that much better in two weeks and that means we should go back'.

I waited for his WCC thinking for sure she would insist on it. Instead, she looked at him at the WCC and said "His ears look proportional position on his head, everything looks symmetrical, I don't think he needs a helmet." That kind of deflated me, but being the mother I am and due to the kind of job I did, I already had made another appointment with Dr. Siddiqui to have him reevaluated prior to even coming to the WCC. Our evaluation with Dr. Siddiqui was the next Tuesday so I decided to keep it and take him back anyways. Mainly for peace of mind, but also to know that I had done everything I could in case Graham ever blamed me for a misshapen head when he was an adult.

We waited an hour to see Dr. Siddiqui, which made my anxiety sitting in the waiting room even worse. We ended up walking the hall for almost thirty minutes and when we finally got into the room the nurse asked me if this was our first evaluation for plagiocephaly and brachiocephaly I looked at her odd and said, "No, we came in back in December when he was four months old and saw Dr. Siddiqui's fellow even though we were on Dr. Siddiqui's schedule." She said that she hadn't seen that note but would look back and find it so Dr. Siddiqui could look it over before coming in. She must not have done this because Dr. Siddiqui came in and when I said we were there for evaluation for a helmet he said, "it's too late, he's too old." To which I of course already frustrated by a long wait and having been told specifically to come back at nine months exclaimed, "What do you mean he's too old?! Your fellow told us to come back when he was nine months!" This kind of took Dr. Siddiqui aback and he asked for clarification of his birthday and then he realized he was only nine months old instead of a year old and clarified the details of us having come in at four months and said, "Sorry, no let's evaluate him. If appropriate a helmet could still be useful." I set Graham on the ground and Dr. Siddiqui took less than 10 seconds looking from the top view of his head and said, "He definitely could benefit from a helmet." And just like that we had a prescription for a orthotic helmet and I was honestly relieved. More on that later.

A couple of days later we were in the Orthotic specialty clinic to be fitted for the helmet. I thought it would be a very fast appointment, however it took almost 2 hours! The scanning of Graham's head itself took less than thirty seconds. The discussion of his measurements however took much MUCH longer. To summarize them he has severe brachiocephaly (96%), and moderate plagiocephaly (7 mm), his right ear is farther forward than his left ear by 4 mm, and his brachiocephaly is so bad his head is wider than it is long. When the tech asked me when I first noticed I told him as early as 7 weeks, and we had asked every pediatrician and even seen Dr. Siddiqui's fellow at 4 months and they all told us to wait. He just shook his head and said, "it's sad how often this happens, your child could have had this corrected by now if he had gotten a helmet as young as 6 months, but now that he's past the major head growth spurt of 3-8 months he will probably have little if any improvement in a short period of time and will have to have the helmet much longer now that he is older." Of course, that's not what you want to hear when you've got your hopes up and finally feel validated that something is wrong. I seriously wanted to smack him because he said that at least 4-5 times that we, 'would see little if any improvement depending on his head growth.' We left with the helmet ordered, expected to arrive in ten days. It will be here next Tuesday and I'm very anxious for it to be on his head so we can get some kind of correction.


The aftermath:
This whole experience has me just tied up in knots, sick to my stomach, and furious as hell at the same time. As someone who works in the healthcare industry I suddenly realized why some mom's are so vocal, because they have to be! Because sometimes no one will listen or agree with their concerns! I was right from the beginning, Graham's head is severely affected according to the numbers with little improvement from his 4 to 9 month pictures (below). And yet I had THREE pediatricians and ONE Cranial-ortho fellow tell me he didn't need it, 'to wait and see' and that 'it would correct itself.' And it wasn't like this was over a short period of time, this was at each of his preventative visits from age 2 months to 9 months and a specialist visit around 4 months. And yet despite my pushing, my constant mention of it I got the brush off by them all about something that is fairly difficult to correct after 9 months, and impossible to correct after 18 months (ish). Something that could have been corrected so much easier and according to the tech with much better results if we had gotten a helmet at a younger age.

Now it's very much a question of 'how long will we have to keep this helmet on to see improvement? Six months? Longer?' When he could have only had to have it for 7-8 weeks, now we get to have it for three times that length of time to hopefully get a moderately normal result. Why did that fellow tell me to bring him back at 9 months?? Why didn't he say bring him back at 6 months when you can still get good results from a helmet?? Why did I doubt my mom instincts and think that I was seeing things that weren't there? Especially when many other people noted on it?

When I said that I was relieved that Graham had finally been given a prescription for a helmet, it was because I felt like I had been the only one concerned about it. Many people have asked me if I'm worried about how other people will react or how it will be having a helmet, the truth is I'm not really worried about those issues  - although it will be difficult having the helmet over the summer due to heat - I'm much more worried that we're getting it too late. I'm worried that I didn't advocate enough for my child. I'm worried that despite all my efforts I still failed to do what is best for my child. Getting that prescription relieved most of those fears except for the, 'it's too late' one. That was only made worse by the tech's comments. I can only pray that we see good improvement, and that we don't have to have the helmet longer than absolutely necessary. And next time, I'll trust my mom instincts.

 
4 months: see how the back of his head is flat but on an angle?

 
Side view: look how flat the back of his head is

Look at that bump on the left side of his forehead in this picture 


 
9 months: still very flat in the back, but more evenly flat, look at the front where the bump was (bottom left of his head in this picture) you can still see the bump - very little improvement!

 
Side view: see how the crown of his head is so oblong?



Wednesday, May 10, 2017

Graham Robert: 9 months

It's so sad to me that Graham is so close to being a year old; but also very exciting! We're so so close to traditional crawling, he can however backwards scoot, and arm scoot/roll to get to what he wants but still HATES being on his tummy for very long. We recently set up our trampoline and he loves to be bounced (gently) on it as long as you're holding him as well. Graham has started crying very dramatically if he feels he hasn't been held recently enough or you're not right next to him giving him attention. He's becoming a little bit more of a momma's boy, but still goes to dad if there's a choice.

 We went to Graham's nine month Well-Child-Check and were told a referral for a helmet is necessary. His flat spot just hasn't corrected on it's own like we were hoping it would and I want it fixed before it's too late. His hair is growing in thicker so it mostly hides it but you can still see it from above and it's VERY distinct when his hair is wet.

Graham is teething like crazy, I think when we felt in his mouth there were 7-8 teeth trying to come out! Poor little dude is miserable because of it. He won't take any teething toys so I'm going to try out the amber necklace we got for Hilton and see if it helps. One good thing is that he is getting really good at his pincer grasp and can now pick up treats from his high chair tray so I put lots of graham crackers on there and he gnaws on them. Still loving our Graham-man, Graham-ster, Grah-meister, and Graham-cicle.

  • Weighs 24.8 lbs. (75%)
  • Height 22.5 in. (24%)
  • Wearing size 12-18 month clothes
  • Wearing size 4 diapers although almost time for size 5!
  • Still takes about two 2 hour naps each day
  • Eats about 6.5-7 oz. every 3 hours
  • Finally ate our first solid successfully: vanilla yogurt!
  • Has started sucking his thumb to teeth on
  • Almost has four new teeth on the top, they're just under the skin
  • Might be a south-paw - he shows preference with that hand when picking things up


  • Constantly wiggling and moving so all the pictures are blurry!



    This is as close to on his back picture I could get, he rolls over immediately!



    Monday, April 10, 2017

    Graham Robert: 8 months

    Graham is growing up so fast! He no longer looks like a little baby anymore to me, he's definitely starting to become more independent and wants to be wherever the party is. He does not like being left alone in a room even if he has toys or is in his jumper. He is getting very good at sitting in his high chair so we have done the dishes together many times now.

    On another note, we had to take Graham in to get antibiotics for his sinus infection that wouldn't go away (2 weeks of being sick with no change in symptoms) and the new pediatrician that we saw (who I love and is going to be their pediatrician) also brought up her concerns about Graham's flat spot. Made me feel totally validated and is the first doctor that agreed it was an issue without me bringing it up at all. If by his nine month check-up it hasn't corrected itself, she feels we need to go back and see the specialist regarding it.

     Graham is finally sleeping until 6:15 or when I go get him up, so I'm not waking up 30 minutes before I need too which is so nice. Graham is showing more and more interest with whatever Hilton is playing with and has even started to grab his toys. This is super sweet because they'll be little playmates, but super scary since Hilton has lots of small toys (legos, marbles, etc.) so we are starting to put those away or save them for times when Graham can't access them (i.e. church or the basement). Hilton also is going to need lots of practice on sharing, but it will work out.

  • Weighs 21.5 lbs
  • Wearing size 12 month clothes (starting to even get tight so I'm about ready to pull out our 18 month clothing!)
  • Still wearing size 4 diapers
  • Takes about two 2 hour naps each day
  • Eats about 6 oz. every 3 hours
  • Still hates solid foods except for graham crackers (LOL)
  • Got his first haircut this month! The top was getting so long and onto his forehead so I figured it was time. Much harder to cut than Hilton's hair though!
  • Content either sitting watching Hilton play or in the jumper - still doesn't love tummy time and now hates being laid on his back unless he has a bottle (see below) but is so close to crawling! We're almost mobile!
  • Prefers to sleep on his stomach or side, moves a lot in his sleep 
  • Starting to jibber jabber more and more. Exclaims 'Ooo!' when he sees something that interests him (normally ceiling fans :)
  • Loves getting raspberries blown on his tummy and giggles like crazy
  • Nicknames include: Graham-ster, Graham-man, Graham-cicle, and Baby Graham





  • Monday, March 06, 2017

    Graham Robert: 7 months

    Our sweet little Graham is growing up too fast! He likes being in the car more now and has learned to play with his carseat toys which is great. Graham is holding his own bottle!!! Hallelujah! Such a difference and a life-saver in being able to give him a bottle and then do things while he eats. I love having a baby but I definitely feel tied down holding them for 20-30 minutes every three hours to feed them. Once my babies start to become more independent my stress levels and anxiety related to motherhood goes down quite a bit.

    Graham officially doesn't swaddle for naps or bedtime anymore which is nice because he isn't waking up due to breaking his swaddle. He is still not sleeping through the night completely, he wakes up around 5:30am and cries until I go in to give him his morning bottle at 6:00am. I seriously hope that we can get him eating solids so it can help him feel fuller longer and hopefully sleep the whole night! Graham is entranced with everything Hilton does and watches him like a hawk. It's clear he wants to be doing what Hilton is doing so I know they'll play well. I am very excited to see how they become friends. We love our little Graham-ster, Graham-man, and Baby Graham (as Hilton still calls him).


  • Weighs 20.5 lbs
  • Wearing size 12 month clothes
  • Wearing size 4 diapers
  • Takes about three 1.5 hour naps each day or two 2 hour naps
  • Eats about 6 oz. every 3 hours
  • Still hates solid foods - no matter what I try he gives me looks like I'm trying to poison him. Any suggestions??
  • His hair is getting longer and thicker, I love it
  • Loves to be held or in the jumper - still doesn't love tummy time but can now sit for short periods of time so we're working on getting better at that.
  • He can roll from back to front and front to back now so he doesn't get stuck on his belly in his crib anymore!
  • He is sitting up and loves to sit and play with toys on the floor.
  • Grabbing his toes whenever he's laying on his back and squawks and squeals when you talk to him
  • Has the biggest grins when I coo at him and responds to the sound of my voice but is definitely a daddy's boy
  • First ear, eye, and sinus infection this month :( so sad! Thank goodness for a nose frida!








  • Friday, March 03, 2017

    Smith Chicks: New chicks

    I did not think chicks grew into chickens so fast but wow! We got our second set of baby chicks and the difference between the two sets is comical.

     
    Pictured is Dot - now renamed Anna since she lost her Dot so we can't tell her apart from Elsa anymore. This is Anna (Dot) at just a couple days old.

     Look at how ginormous a little over a 1 week old chick (Elsa and Anna) is compared to a 1 day old chick! I hadn't even noticed how many feathers they had gotten and how big they had gotten. Crazy! It's like when you don't think your toddler is big until you put them next to a newborn and then they seem gigantic!!!

    Pictured here is Bucket - Hilton wouldn't stop insisting upon using that name when I asked him what we should name them so I got to name the other two new chicks and he got to name this one. Although I thought my name suggestion for Bucket was much better - Snowflake. To his credit Bucket seems to like him so I think it was a good choice. Bucket is a Silver Laced Wyandotte and will grow up to be white and black striped (kind of) on the ends of her feathers. Google it if that doesn't make sense.

    Holding Bucket and Licorice - Hilton is always asking to hold the baby chicks and is definitely obsessed! It will be sad once they're too big for him to easily hold, although probably better for the chicks since he likes to poke them with his nose and squeeze them a little too tight so they start chirping like crazy.

    Pictured above are our three new chicks, from top to bottom Licorice (all black - Australorp), Chocolate (brown - Golden Laced Wyandotte), and Bucket (white and black - Silver Laced Wyandotte).

     At two weeks old look at how feathered Elsa (or Anna) already is! They're also already getting their wattles. It seems like it's just around the corner as to when we will need to move them outside to their coop which I have yet to build. Better get started on it!

    I was worried about having two chicks so much older then the other brand new ones from what I had heard from other chicken raisers but they have been so sweet together and as evidenced above all sleep together and get along just fine. So far no pecking order here!

    Thursday, February 16, 2017

    Smith Chicks

    We got our first two baby Chicks yesterday! Am I crazy or 'out of my mind' as my mother asked? Nope! I've secretly - or not so secretly - been wanting to get chicks for almost a year now. I started thinking about it seriously last fall right after having Graham, but since I had a brand new baby I decided it probably wasn't the best timing. Plus with winter right around the corner they wouldn't have done well outside and would have had to be kept inside for a couple months until they were fully feathered.

    This all came about because Grandma and Grandpa Smith's neighbor has two chickens and Hilton BEGS to go see them and feed them every time we have gone to visit them for probably the past year or so. I also have a neighbor and a couple coworkers who talked me into them as being easy to care for, low maintenance, and many benefits (eggs). I figured this would be a great life lesson about where food comes from for Hilton and to teach him to learn about caring for creatures from a young age.

    Well it's easy to expect but Hilton is in LOVE with these little guys!



    And I have to admit they're pretty stinking cute! Although one did poop on Hilton within the first 30 minutes of having them home so that was pretty funny. Hilton then proceeded to tell me that we need to teach them how to poop on the toilet. I got a kick out of that since we've been ingraining into Hilton how we're all supposed to poop on the toilet.

    So the two baby chicks we got are Buff Orpington's and we plan on getting two Wyandotte's next Friday so I will post more photos and adventure's on chick keeping then. Also our baby chicks are still unnamed! Hilton's suggestions are 'Bucket' because I keep telling him to stop knocking on their bucket because it scares them (he's very enthusiastic about making sure they're still alive so he has to get confirmation by making them cheep or move around), and Jared's suggestions are Breast and Drumstick (hardy har har). Any ideas? I'm open to them!

    Monday, February 06, 2017

    Graham Robert: 6 months

    Our sweet little Graham is halfway to one year old! He is becoming more and more giggly, and recognizes my voice and will turn towards me smiling if I coo at him. He has been fighting naps, and breaking swaddles more and more. It's only a matter of time until we have to break him of being swaddled but of late he actually refuses to eat unless he is swaddled. Graham is still not sleeping through the night so sleep training is on the horizon (again). Hopefully it works. Graham knows what he wants and has figured out to get our attention he has to be louder than Hilton. He is definitely infatuated with Hilton and loves to 'play' with him as much as he can. He watches in his jumper as Hilton plays lego's or pushes around his tractors. They have also had the most adorable laughing fits where Hilton starts and Graham then starts giggling back. He always looks to see if Hilton is in the car when I put his car seat into the car. I am very excited to see how they become friends. We love this sweet little addition to our family.
     
     
  • Weighs 19.5 lbs
  • Wearing size 12 month clothes
  • Wearing size 3 diapers - needs to be moved to size 4
  • Takes about three 1.5 hour naps each day if we're lucky since napping is still a fight
  • Still eats about 5-6 oz. every 3 hours
  • Still hates solid foods
  • Now has two bottom teeth!
  • His hair is getting longer and thicker, I love it
  • Either has to be held or in the jumper - still doesn't love tummy time
  • He can roll from back to front and is trying to sit up which he's getting better at
  • Has the biggest grins when I coo at him and responds to the sound of my voice


  • Such a sweet smiley baby!




    Look how I can roll mom!


    Come here bear, I want to give you lovin's