Wednesday, August 23, 2017

Graham's Cranial Journey: The Second Checkup

We had our second check-in on Graham's head growth and are feeling rather discouraged.

In this past month he had...wait for growth. Whatsoever. So he is still at 93% brachycephaly and unless he has a huge growth spurt next month we will not have made much progress. He went from 7.5mm plagiocephaly to 6.9mm plagiocephaly in the past two months so very minimal progress there as well.

The tech was very discouraging or realistic as Jared would say, his opinion is that if we don't see anymore growth this third month that we should give up. He said that there's no point in 'torturing' Graham with the helmet if he's having so very little to non-existent progress. I'm not entirely convinced I feel this way, I feel like we should try as long as we possibly can to fix it. Jared is of the opinion that we should give up after this third month no matter what.

I also feel like having the helmet has delayed Graham's gross motor milestones (crawling and walking). I feel like since we've already had the helmet on this long and he's already had those delays I want to try to get all the use out of the helmet that we can and make it worth the sacrifice we've already put into it. We will see at our next checkup where he is at and go from there.

2 months with helmet:

Pre helmet:

2 months with helmet: 

Pre helmet:

Friday, July 21, 2017

Graham's Cranial Journey: The First Checkup

We finally had our first official check-in on Graham's head growth and got some great news!

In the month that he had it on he only had 3mm (itty bitty tiny) amount of growth. When the tech told me this number first I braced myself for bad news. That little growth means you probably won't see any real changes. But then the tech told us that all 3mm of growth was exactly where we needed it! All in the back of his head. And that his head actually lost 1mm of width while in the helmet so it really is helping to reshape his head! He went down from 96% brachycephaly (severe) to 93% brachycephaly (less severe).

The tech feels that if we have two more months of growth only where we need it in the back of his head that we may finish in the mid 80% range which is what they consider acceptable for a child with position brachycephaly. He also clarified that if we don't get those results in the next couple months that the helmet can easily fit him until he's almost 18 months old and we could keep going if needs be. I hope not, but definitely good news on the helmet front (or back ;)).

1 month since starting helmet:
1 month since starting helmet:


Up picnicing a couple Sunday's ago:

Hiking at Silver Lake:

Saturday, July 08, 2017

Graham Robert: 11 months

I know I keep asking this, but how has a month passed again already?? Graham will be one year old in a month! How has it already been a year since my precious boy was born?! Graham went on his first ever road trip and did really well. Six hours to Las Vegas and he barely fussed and cried. Coming home was another story, but still! Hilton was a huge help passing him toys in the backseat to keep him entertained. Graham really didn't sleep well in an unfamiliar location so hopefully by September he'll do better for Disneyland. We have however had to work on explaining that Hilton is Graham's big brother and needs to protect him, poor Graham has gotten a bit pushed around now that he is crawling and getting into Hilton's toys and Hilton views him as a threat. We have really worked on how if Graham is doing something Hilton doesn't like, Hilton should call for mommy or daddy to come get Graham and it seems to have really helped prevent sibling abuse. Brotherly love is hard sometimes!

We all feel like Graham's helmet has helped but due to scheduling issues he doesn't get rescanned for his head progress until next Monday. Hope for good news! He still tolerates the helmet and has had to have it off intermittently the past week due to a upper respiratory infection with a fever but doesn't mind it once it's on. Just hates having it taken off and put back on.

Graham had a good couple weeks of relief from teething, but has started again. Hopefully we break these new teeth quickly! He has picked up the unfortunate habit of teeth grinding with his new teeth so we're working on breaking that. It sounds so awful! He has started being much more cooperative to eat baby food, mainly will eat the Gerber pureed combinations, and still loves yogurt and ice cream. We are starting to transition him over to milk from formula, I'm hopeful we can have him transitioned by his birthday. He however, doesn't love milk and when we first tried to start switching he refused to drink his bottle. We are trying again and he is doing better this time.

Our summer activities include lots of swinging in the baby swing (his absolute favorite only thing that will calm him down if he's really upset), swimming at Farmington pool, practicing walking and crawling after tennis balls. We're trying to stick inside for the air conditioning but still find ways to have fun. We sure love our Graham-man, Graham-ster, Graham-cicle, and Mister-Fister.

  • Weighs 24.8 lbs. (75%)
  • Height 22.5 in. (24%)
  • Wearing size 18 month clothes
  • Wearing size 4 diapers still
  • Taking 1 -2 hour nap and 1 - 1 hour nap each day
  • Eats about 7 oz. every 3 hours
  • Starting to teeth again, one more trying to break through on the bottom
  • Huge fan of ice cream, mainly due to the cold I think
  • Walking along furniture


    Tuesday, June 27, 2017

    Graham Robert: 10 months

    How is it already a month later?! Graham started crawling and pulling to stand within a week of each other! The crib got lowered, and we've started to have to re-babyproof the house. The hardest thing is going to be getting Hilton to make sure the baby gate to the stairs is closed, he opens it and forgets to close it behind him. Graham has officially made it known that he has decided he wants mom more than dad. He cries if I hand him to Jared for something which makes me feel bad because I want him to prefer Jared. He's also become very demanding wanting to be held and sometimes will cry no matter what I do.

    We officially got Graham's helmet, he's had it for a couple weeks and I might be crazy but I feel like I already might see some change. He gets re-scanned at the end of the month so we'll see what improvement he's made.

    Graham is still teething like crazy, but at least his four top teeth finally broke through. He is getting sick of graham crackers and Ritz crackers. He will still eat yogurt and has now agreed to ice cream but basically refuses other baby foods we've tried. I've tried give him bits of bananas, grapes, strawberries, and string cheese and he pushes them right onto the ground. Still loving our Graham-man, Graham-ster, Grah-meister, and Graham-cicle.

  • Weighs 24.8 lbs. (75%)
  • Height 22.5 in. (24%)
  • Wearing size 18 month clothes
  • Wearing size 4 diapers still, about ready to move to size 5
  • Still takes about two 2 hour naps each day
  • Eats about 7 oz. every 2 hours
  • Having trouble expanding our solids selection of what he will eat
  • Crawling like crazy!
  • Pulling to stand everywhere now
  • Had to lower his crib
  • Has four new teeth on the top, they finally broke through!

  • He wasn't super happy so we never actually got a smile, but he's normally very smiley! 

    Monday, June 05, 2017

    Graham's Cranial Journey: First two weeks

    We've officially been in the helmet for two weeks now and he has finally gotten used to it. The worst days so far have definitely been adjusting into the helmet. Not so much because he disliked the helmet itself; it was much more that he HATES having it taken off and putting it back on. He still does.

    The first day he was in for one hour, out for one hour. The second two hours on, two hours off. Then to four hour increments, eight hour increments and then the fifth day he was on full time. Pretty much a pain, but now he's pretty much used to it.

    Now that the days are getting warmer we are definitely going to have to avoid a lot of time outside or in the car. Even just thirty minutes outside in the shade yesterday and his head was all sweaty when I took off his helmet while got him ready for bed. He's not a fan of having his hair blow dryed after getting it washed or when he is sweaty so we will see how restricted we are this summer. Otherwise so far so good.

    Getting fitted the first day:

    At Lagoon:

    Surviving with ice cream:

    While camping:

    Happy as a clam:

    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!