physical therapy update...

I am happy to report that Josiah will soon be coming to the end of his pt in a few months, assuming that all goes well.  Praise God!  The new techniques we've been using with our pt have worked wonders, by God's grace.  Josiah still has an ever-so slight tilt when he's watching tv or in his resting state, but no one would notice unless you really looked for it.  This is most likely the best it's going to get.  And our pt was very reassuring by saying that everyone has a slight tilt every once in a while anyway.

We have been meeting bi-weekly over the last month or so to see how his neck and body are holding without doing pt so often.  So far, he has been doing well with just needing a little tweaking here and there.  So if everything goes well, we will try meeting once a month for a few months, with the goal to exit the infants & toddlers program sometime in the summer.  Yay!!

physical therapy update...

For a while, it looked as if we were going to exit out of the Montgomery County Infants & Toddlers Program (MCITP) since there was nothing more that our physical therapist could do for Josiah.  He still has a slight left tilt, but other than that, is perfectly fine.  After speaking to some physical therapists at Children's Hospital, we had hopes that Josiah would eventually grow out of it, since there wasn't much more we could do for him.  Just recently, the county re-did their boundaries for their offices because of the opening of a new office (don't remember where it is).  So since we were going to lose our current physical therapist with the new change, and there wasn't much else to be done for Josiah, we were planning on exiting the program soon.  However, the new physical therapist who was to be assigned to us said that she has been using some new techniques that has had some promising results, which may help Josiah.  So we decided to meet with her to discuss it further.

What she shared was actually very counter-intuitive to what we had learned about torticollis.  She is an older woman with a lot of experience, and she said that with almost every case of torticollis she had worked with, the children all ended up having great range of motion in their necks from the stretches and exercises, but not the function.  In other words, the children all had the ability to not tilt, but were still doing so out of habit.  What's difficult is that as the child gets older, the harder it is to do the neck stretches because they all end up resisting it.  It's extremely uncomfortable for them.  This was exactly the case with Josiah.  When we were still doing the neck exercises, it was like having a wrestling match with him... a lot of fussing and sometimes crying.  The worst part of it is that he has to be relaxed to do the stretches properly.  If he's resisting or pushing back, then he's actually strengthening the part we don't want strengthened.  Josiah has full range of motion, but just tilts out of habit.  So it was interesting to hear what the physical therapist was saying because she was totally describing Josiah.

The new techniques she has been using are called Total Motion Release.  And they have nothing to do with neck stretches (even more interesting to me).  She did a series of 7 different stretches all on the rest of his body and told us different areas that were tighter than others.  It's possible that with torticollis, certain parts of the body get tighter to compensate for the tilt.  The stretches are unique in that they emphasize the tilt.  The idea is that if you stretch into the tight areas, it'll help the body release and loosen the tight areas so the neck and body can correct itself.  (I know... sounds kinda whack.)  Some other exercises she had told me to do with Josiah are the exact opposite of what we had been taught by the other physical therapists, which is so odd to me... that these techniques are so counter to what most other physical therapists are doing.  Our physical therapist said the research on the Total Motion Release is relatively new and when she first heard about it, she thought it was "hocus pocus."  =)  But after working so long with kids who had torticollis and seeing them gain full range of motion without the function, she decided to give it a try since there was nothing else that could be done for them.  And she said the results she has had have been amazing, and the best part is that the children tolerate these stretches so much better because they have nothing to do with the neck.

Bill & I figure it's worth a try.  It can't make Josiah's neck worse... especially since he already has full range of motion.    It's just a matter of strengthening his neck to function like it has full range.  So I guess we're gonna give this mumbo jumbo a shot.  =)

torticollis update 2...

We have decided to reduce Josiah's physical therapy to once a month.  His physical therapist said there's not much more that we can do at home to help his torticollis since he's so active now.  Most of what we need to do requires us to be outside the house, like going to the pool, playground, or participating in a toddler gym.  The pt actually said if they were to evaluate Josiah for the first time now, he would not qualify for the program since his torticollis is so mild now.  We are very grateful for how far God has brought him.

With all that, we've decided to sign him up for a toddler gym class to see if the exercises there will help to improve his tilt.  It's just a regular gym class, but the balancing, tumbling, and use of the gym equipment should naturally help his torticollis.  In God's kindness we found a 2 for 1 class, so we will do our best to go twice a week.  I think going twice a week will really benefit Josiah instead of just going once a week.  Our pt will just come once a month to check-up on Josiah, and we will re-evaluate our involvement with the Montgomery County Infants & Toddlers Program after the gym class.  We are hoping this gym class works for Josiah (especially since it's so expensive) and that he won't get sick too often as the weather gets colder!  =P  (The class runs from the beginning of September to the end of January.)

torticollis update...

To our surprise, the physical therapist that has been coming over to help w/Josiah's torticollis suggested that we pursue some other avenues to make sure that his torticollis isn't being caused by something physical, rather than muscular.  Since we haven't seen as consistent progress in the last month or two, she said that on rare occasions, there could be a misalignment in his vertebrae that could be causing the tilt.  So she suggested we see a pediatric orthopedic to look at him and see if he should have some x-rays done.

We went to Children's and had him looked at by a nurse and a physical therapist.  They did a few stretches w/him and watched him walk and crawl.  After working with him for a few minutes, they said that he has great range.  They said that in most cases w/torticollis, it's an issue of stretching and strengthening.  From the stretches they did, they said his range is fantastic.  He can stretch easily to both sides of his neck without difficulty, and they couldn't feel any muscle tightness on his left side.  So they said they suspected it's not a stretching issue anymore.  And from observing him, they saw that his tilt wasn't evident all the time.  It seemed more out of habit and when he was in a resting state, that his tilt would come out.  If it was a misalignment, then they would have seen his crawling compensating for the tilt and it would be consistently there.  So they emphasized the need to do more strengthening exercises w/him.  They gave us some strengthening ideas, which were very helpful since he's at that age where he won't sit still long.  It really has to be something more active we can do w/him, like having him climb, doing balancing activities, or things we could do w/him at a pool.

The physical therapist did not see a need whatsoever to do x-rays or anything since she said usually in those cases, the neck muscles are still somewhat tight.  But w/Josiah, they didn't feel any tightness at all and especially since his tilt comes and goes (especially depending on how active he is), they suspected that it's more strengthening we need to work on.  They did mention something called the tot collar (I know, it sounds horrible!).  It's a collar that you put on and they wear it for 6-8 hours/day.  It's adjusted so that it's uncomfortable when you turn your neck a certain way, so it forces you to hold your head in the correct position.  The idea is that if you do it for 6-8 wks, it should help break the habit of tilting the head.  But the PT said she usually recommends it for cases that are worse than Josiah.  But if it was something we wanted to look into later, especially if the strengthening exercises aren't working, we could meet w/her again.

I don't want to do the tot collar.  The PT said that since his torticollis is so mild, it's something that Josiah could actually outgrow on his own anyway as he becomes more and more active.  What a relief to hear!  So we'll just keep plugging away w/our monkey.  =)  We have another appt in October at Kennedy Krieger (in Baltimore), which has their own cranial clinic.  Not sure if we will keep that one, but we'll see how Josiah does in the coming months.

update on our monkeys…

Just a quick update on the latest with the boys...

William:
One thing that William does that cracks me up is when he sings "The B-I-B-L-E, yes that's the book for me. I stand alone on the Word of God, the B-I-B-L-E." So instead of singing "The B-I-B-L-E..." he sings, "The B-I-B-L-T..." He's figured out that that makes us laugh so he sings it that way on purpose now, but it was amusing when he didn't know what he was doing.
William's imagination has really been taking off. I love watching him build things with his Legos and tell me what they are... sometimes they're cranes, boats, towers, etc. He also has been playing with some imaginary friends: June & Annie from Little Einsteins. He LOVES that tv show and has become a bit of a tv junkie. June & Annie are the female counterparts on the show. He particularly likes June. =) It's interesting to me that he also talked a lot about Wonder Red when he was hooked on Super Why. He seems to find some kind of attachment to the girls in these shows... or maybe he just likes girls... I won't try to psychoanalyze this too much, but I just find it interesting that none of the characters he talks about are male. Go figure...
Potty training continues to go very well. He is now using the regular toilet for pee, but doesn't like using it when he has to poop. He also can tell us every time now when he has to use the bathroom, so I can't remember the last time he had an accident. We are very pleased with how William has been doing. Yay, William! Haven't tried venturing outside in his underwear yet. Maybe we'll try that after our vacation to Williamsburg at the end of the month. =)
Another neat thing with William is that his screaming at night has significantly decreased since we got back from Pittsburgh. Not sure why this is the case, but we're grateful that our boy is sleeping more soundly now!
William still has quiet/nap times everyday and will generally nap most days.

Josiah:
Josiah's comprehension has skyrocketed over the last few months. He's not anywhere close to talking yet, but his understanding of what we ask of him and what's going on around him is really remarkable to us. He can come to us, come when we tell him it's time to change his diaper, come when we tell him it's time to eat, knows where to find his paci, understands when we tell him it's time to go upstairs/downstairs, knows to get his shoes when it's time to leave, puts things back when we ask him, etc. It has been so neat watching him begin to understand his little world and our routines at home.
Josiah is also just beginning to learn some signs. It's exciting to see him learn to communicate, as it will make things easier and less frustrating before he learns to actually talk.
Our little monkey also has quite the temper. =) (I wonder who he got that from...) ;) He is very clear on what he wants and doesn't want, so we’ve been doing a lot of training with him (much more so than we did with William at this age). Josiah continues to be our little firecracker, but can also be affectionate (also much more so than William was at this age). Josiah likes to be comforted, gives kisses, likes to lay his head on our shoulder, and loves to be held most times. I wouldn’t consider either of our boys snuggle-able or extremely affectionate, but we definitely have our sweet moments with Josiah... and with William, just in different ways now.
We’ve had several remarks about how little Josiah is. I guess we don’t notice b/c we’re w/him all the time. Oh, well. He has plenty of personality to make up for it. He’s our little goofball. ;)
Josiah loves to clap for himself or for William when either one are praised for obeying or doing a great job with something. I love how he encourages William to obey. It’s really sweet. He also loves to play peekaboo, except we say, "Where's Josiah?" when he covers his eyes and "There he is!" when he throws his hands out.
Josiah continues to take 2 naps (one in the morning and one in the afternoon). Recently, his naps seem to be getting shorter and he is taking longer to fall asleep. So I wouldn’t be surprised if we had to push his nap later or transition him to one nap a day soon. Josiah has also been doing great with table foods. He seems to have grown out of his reflux since he doesn’t throw up everything new we give him. The more he eats table food, the more he seems to reject his baby food. It shouldn’t be long before he stops eating baby food altogether. He’s still taking zantac once a day for his reflux, but we’re in the process of weaning him off to see how he does without it.
Josiah also is still doing pt, but now it's every other week. The pt has been encouraged by how much progress Josiah is making and said that hopefully, sometime in the near future, we can reduce his sessions to once a month. When it gets reduced to once a month, it's really just a formality and an opportunity for her to stop in every now and then to make sure he's still doing well. For now, our pt wants to continue meeting bi-weekly for at least a few more times to make sure he's staying strong and not regressing. It is exciting to start to see the light at the end of the tunnel. Can't express how grateful we are to the Lord for the work He has been doing in Josiah!
Both the boys seem to be playing together more and more… and learning how to enjoy one another. It has been great watching their relationship blossom. We are so blessed beyond measure! Love them to pieces!

happy 1st b-day, josiah!!

Boy, what a year! The Lord has certainly brought our Smiles a long way since he was first born. From being IUGR, along with having low amniotic fluid and minimal blood flow through the umbilical cord while in the womb, Josiah was born a preemie, having to stay in the NICU until he was 5 lbs so we could take him home. A few weeks later, he had a choking episode that sent him back to the NICU, only to return home w/an apnea monitor, which was very much the thorn in my side... (This was all in the first 3 months, mind you.)

newborn 1 month 2 months

From 3-6 months, we noticed Josiah’s plagiocephaly, but decided to wait a little to see whether his head would round out on its own. He also began taking zantac for his reflux.

3 months 4 months 5 months

At 6 months, we discovered our monkey had torticollis and a severe case of plagiocephaly. Josiah quickly began physical therapy to begin correcting the torticollis. We also began to take more serious measures to keep him off his back as much as possible to keep his head from getting more flat.

6 months 7 months

At 8 months, Josiah had his band on. He began crawling while in the band. At 10 months, we began to see some specialists to see whether Josiah’s torticollis was caused by something other than his neck muscles.

8 months 9 months 10 months

At 11 months, Josiah was out of the band and all the specialists we saw said that he was doing great. He has full range of motion in his neck. It’s just his tilt that we’re working on getting rid of, which is the the most difficult to overcome.

11 months

And now here we are, at one year, still continuing with physical therapy and some reflux issues, but so thankful to the Lord for sustaining Josiah’s health and well-being. Looking back on this year, we are so incredibly grateful to God that nothing he had to walk through was really of a serious nature. He still has asymmetry in his face and head, but there is much grace in how it has improved from before he had the band.

1 year!!

And just some quick things to note from over this past month: Josiah loves to wrestle w/pillows. He’ll just throw them on the floor and pounce on them and roll around w/them. He stops to listen to planes flying by. He can point now. And it’s cute when he holds something up for you to take… it’s usually something he knows he shouldn’t have or something he found on the floor.
We’ve also been trying to get Smiles started on table foods, but the only foods he can eat w/o gagging, choking, or throwing up are bananas, yogurt, and cheerios (which he can totally eat on his own. I’ve been giving them to him one by one. I’m afraid he’ll choke if I put too many on his tray b/c I’m sure he’ll try to eat them all at once.). We’ve tried w/other foods, but he almost always will throw up at least the first time he tries something new. He threw up with the bananas and cheerios at first. Yogurt is the only thing he’s been able to keep down, but I don’t think he likes it very much b/c of the tart-taste and it’s cold. And I have no recollection about what or how we started William on table foods. He didn’t have the stomach issues that Josiah has though. Smiles gags, chokes, and will throw up w/anything new. It’s just a question of whether it’s something we should keep trying to give him. =P Maybe we should try fruit…
Josiah’s naps have also significantly improved. We had our Smiles cry it out when he was 6 months, but I had gotten into the habit of bouncing him to sleep anyway b/c he is so easy to put down. Just a few minutes of singing and he is out! I loved watching him fall asleep, especially since I could never do that with William. And Josiah is such a sweet baby… It’s the only time he’s calm and content to be in my arms. Now that he’s older, it takes him a little longer to get to sleep, and Bill talked with me about the importance of him being able to get to sleep on his own, so we put him down awake now. And usually w/only a few minutes (if that) of crying, he’ll settle down on his own and go to sleep. Yay, Josiah! He is still taking a nap in the morning, which is usually just shy of an hour. And he’ll take another nap in the mid-afternoon that’s usually just over an hour. So we are very grateful that his napping has gotten so much better. Good riddance to those half-hour catnaps!!!
And that’s a wrap of our Josiah Qian-Yi Davidson’s first year of life. It’s been crazy at times, but always a joy. We absolutely adore this little one!
Happy birthday, Smiles!!! Can’t tell you how much we love and are grateful for you!! What a gift from the Lord you are to us.

neurosurgeon update 2...

We went for another follow-up appt w/our neurosurgeon at Children's Hospital. It was a quick and easy appt. (I like those.) =) (Actually, we had to wait an hour before seeing the Doc, but once we were in, it didn't take long.) Doc took cross-diagonal measurements of Josiah's head and found there was a 1 1/4 cm difference. Josiah had a 3 cm difference when the Doc first saw him before he got the band and a 1 1/2 to 2 cm difference at his last appt. So Josiah's head is continuing to round out. Yay! Great news!

We talked w/him about what our orthotist at Cranial Tech was saying about why Josiah's head wasn't rounding out as much, and he confirmed that it didn't make any sense that muscle tightness in the neck would prohibit his head from rounding out. He encouraged us not to get another band since Josiah isn't always laying on his right side anymore. And since he's now pretty active and is sleeping in all positions, Doc said his head would still continue to round out... up until around 6-years old. He said we should be pleased w/how much Josiah has improved, so we're very grateful for that.

So Doc said that there was no longer a need for us to see him anymore, unless there was a concern we wanted to discuss w/him. While we are grateful for his expertise and counsel, it is good that we no longer need to see him since Josiah seems to be doing well. We praise and give thanks to the Lord for the kindness He has shown to our Smiles.

exit appointment...

Although Josiah has been out of his band for over a week now, he had his official exit appointment from Cranial Tech this morning. They did the same digital-imaging scanning to see how he had improved from before he started in the band. The results were not drastic, but noticeable... and we were actually very pleased w/his improvements. Our orthotist said Josiah's forehead has evened out, he's gotten more length (from front to back) in his overall head shape, his face shape is more oval (it was more square before), the base of his neck now has more volume (it was completely flat before), the bulges above his ears can no longer be seen, and although his head still has flatness on the right side, the place where the flatness begins is more midline, rather than starting all the way from the left side of his head (if that makes any sense.) =) We also received the life-size mold of his head that the orthotist used for her crystal ball nonsense. =P

The orthotist said she was still perplexed as to why Josiah still has his tilt since we've been doing pt w/him for so long. She said that most babies she's seen are able to "get" corrected w/in a few weeks. But Josiah has had his tilt from before he's been in the band. We didn't really say much since we have already seen a few specialists and they all say he's doing well and on the right track. None have ever mentioned that this was something that could be corrected in a few weeks. So it's a little confusing getting all this conflicting information from her and then everyone else. We will have to talk w/our pt again and see what her thoughts are.

But in the meantime, we are very happy and appreciative over the results. Seeing the orthotist point out all the ways in which Josiah's head did improve was very encouraging, even if they are hardly noticeable. We are grateful for any improvements there were. If nothing else, the band allowed Josiah to stay off his flat side so that it did not worsen.

Thank you again to Mom, for getting the band for us so we could help our baby boy. We wouldn't have been able to do it without you. We are so indebted to you and Glenn for your generosity and love. We love you!!

happy 11-months, wild thing!

It is hard to believe that our Smiles is almost a year old, but he still looks like a little baby. So grateful for that. Don't like seeing him grow up so fast. ;)
The big and WONDERFUL news is NO MORE BAND!!!!! We were going to go to Cranial Tech for an exit appointment, but with the blizzard, we re-scheduled for next week. (Believe it or not, we got hit w/a blizzard a few days after snowmageddon.) So we'll have to hold off on any official celebrating until some of the snow clears out. But they said we could just take the band off today. Can't tell you how excited we were! His hair is another story... Half of it is flattened b/c of the band and the other half sticks straight up, so we cut his hair to give him a fresh, new start.
Josiah has been very busy over the last month. He has learned to wave good-bye and hello. He can cruise and walk using a walker. He can climb all the way up the stairs by himself. He is starting to eat Cheerios and Puffs. He loves dropping things on the floor and seeing where they go. (This drove me nuts when William was in this phase... and it still does!) And our dear baby boy can lift the lid of the toilet and put his hands inside. (I was horrified the first time I found him doing this. Fortunately, he hasn't been able to reach the water. Yuck!!)
We have been honing in on correcting, especially with him touching things he's not supposed to, play-hitting (not intentionally to hurt). And it is really amazing to watch him process this training and learning to obey, albeit not always with a joyful heart.
Josiah also continues to amaze us with with his physical strength. He resists a lot when he wants to keep something we try to take away... usually something he shouldn't be playing with or touching. I usually have to use both my hands to pry open his little ones to get it out. He's our little brute. His physical strength matches his personality... extremely strong-willed. He does not mind letting us know when he's upset about something we've done.
Smiles' naps also continued to be way frustrating up until a few weeks ago. He used to take only 30 or 45 minute naps... usually only 30 minutes though. But over the last couple of weeks, he has been slowly extending his naps. He takes 2 naps during the day now and will usually sleep a little over an hour for at least one of them. And usually, he'll sleep close to an hour for the other. Can't tell you how grateful I am that Josiah is FINALLY learning to sleep more during the day. Even if it's just for an hour. I feel better knowing that he's better rested AND that I can get some other things done while he's sleeping. William is not a good sleeper either. It is a good day in the Davidson home if either of my boys would sleep at least an hour during their naps. I always daydream about what it's like to have a child that takes 2-3 hour naps. That is so unheard of here! =)
The last thing to report is that we tried taking Josiah off his zantac to see if his reflux had resolved itself. But sadly it hasn't. I think within a week he was spitting up a lot more often and sometimes even vomiting. So we decided it was best to put him back on. At least he's doing well on a low dosage!
So that's our Smiles!! He'll be one-year old next month! It blows my mind. Wish so much I could slow down time. Just trying to cherish these days w/him! =)

And here’s Smiles w/his fresh new cut, playing w/Dada’s ethernet cable, of course. He’s about to put that thing in his mouth. And there it goes… =)

pt specialist update...

We took Josiah to see a pt who specializes in torticollis from the list the orthotist gave us. She was awesome! She was an older lady and very experienced. Just from watching Josiah play, she could see quickly which side he was preferring and what type of exercises we should do to help strengthen his left side. It was incredibly helpful! Unfortunately, there were only a few exercises that I managed to remember, but it was great to hear what her thoughts were on Josiah. We asked if she thought anything else was causing the torticollis and she said she was amazed at how far he had come based on where we said he had started out. She said she actually thought he just has a mild case of torticollis. He still has some tightness in his neck, but it's not severe. She was able to see that he has full range of motion. It's his tilt that we need to strengthen and work on. So she showed us several exercises we could do while he's playing that will help strengthen his whole left side in general.

We were so relieved to hear that Josiah's torticollis had really improved a lot so that now he only has a mild case of it. Fortunately, the specialist knows our pt and said she would work with her and tell her the exercises we did together so the pt can go over them again with us. Bill and I walked away with grateful hearts for how far the Lord has brought our baby boy.

I'm wondering now why the orthotist said some of the things she did since some of it now totally doesn't make any sense. But it has been a blessing being able to see all these specialists who are in agreement that Josiah is doing well and is on the right track. That was very encouraging to hear, and we are thankful to the Lord for giving us such a bigger and clearer picture now of where Josiah is at. We just gotta keep pressing on now. =)

josiah's 9-month stats

Even though Josiah is 10 months old, we just got to see our pediatrician for his 9-month well visit. (We were more than 15 minutes late for his original appt, so they had to re-schedule us for another date. Not too happy about that, but what can you do about "policy?")

Anyway, the doc gave rave reviews on Josiah and said he is in picture-perfect health. He weighed in at 17 lbs, 5 oz (still 3rd percentile). And for his height, he is 27 3/4 inches (10-25 percentile).

Doc said he can eat table foods now, except that we should still stay away from nuts, shellfish... and something else I can't remember. =P

I talked to the doc about what the orthotist had been telling us. Doc said that it didn't make sense that his head wouldn't grow as much when he's sick or that his neck muscles are prohibiting his head from rounding out if they're still tight. Even if the neck muscles are still tight, his head should still be able to round out. Doc said the ONLY other possibility for the torticollis is ocular and suggested we see the ophthalmologist just to rule that out. Otherwise, there is nothing else that could be causing the torticollis. She said he looks great and that we should keep doing what we're doing. Even though the highest rate of head growth is in the first year, the head still continues to grow until they're 4-5 years old. So her prognosis was that he did not need to see another specialist for torticollis.

The last bit of good news is that she said that unless we thought Josiah still needed it, we could take him off the zantac for his reflux. He has been doing wonderfully being on such a low dose, so we are going to try and take him off it to see how he does.

band update 2...

We went for another band adjustment, and Josiah's orthotist said she still wasn't seeing as much improvement in his head shape as she would like. He has been healthy the last 2 weeks, so she said there definitely has been a little improvement, but just not what she would expect.

Thankfully, the orthotist said that he has only another month in the band. Can't tell you how happy I was to hear that (despite the fact that Josiah's head hasn't been rounding out the way she wanted)! He still has some obvious asymmetry on his head shape and ears. So she said she would normally recommend another band b/c he still has asymmetry, but since his head shape isn't improving as much b/c the neck muscles are still tight, she wouldn't recommend another one at this time. We'd have to work on getting his neck muscles more loose before we could hope that Josiah would show more improvement in another band.

At this point, I'm just happy that he just has another month. And we are almost positive that we will not be getting a 2nd band. We did the best we could w/Mom's incredibly kind help. The whole process was always in God's hands. And though it would seem there are only minimal results, we are grateful. At least his head did not get worse. And we are thankful we were able to see the neurosurgeon, who was able to give us a measurable improvement of at least a 1 cm in his head shape. That alone is a sweet gift from the Lord, whether it was with the help of the band or not.

neurosurgeon update...

Bill and I took Josiah back to Children's for a follow-up with his neurosurgeon. It ended up being perfect timing since we were wanting to get feedback on what our orthotist said. The doc took some measurements, but said Josiah's head shape already looked better than the last time, which was a couple of weeks before we got the band. He measured the top of Josiah's head cross-diagonally both ways. He said in a neuro-typical baby, the measurements should be about the same. When he first measured Josiah, there was a 3 cm difference. Now there's a 1 1/2 to 2 cm difference. So his head definitely has been shaping out with at least a 1 cm improvement. That was encouraging to hear since the orthodist seems so subjective to me and isn't able to give us any objective numbers to look at.

Our neurosurgeon continued to tell us that he did not think that there was anything else going on with Josiah... that he had a classic case of plagiocephaly and that we should just keep doing what we're doing since it seems to be working well. He seemed very sure that it wasn't necessary to do a CT scan to see if anything else was going on. As long as Josiah wasn't vomiting and was hitting his developmental milestones, we were on the right track. So that was quite a relief to hear. I was a bit discouraged to keep hearing from the orthodist that there wasn't much improvement or "as much improvement as she would like" in Josiah's head shape without any objective measurements to go on.

We will set up an appt with one of the specialists on the list the orthotist gave us, just to get a 2nd opinion on what the neurosurgeon said. We would so appreciate your prayers for more clarity and wisdom on this subject. =)

band update...

For the last month, our orthotist said that she hasn't been seeing as much improvement in Josiah's head shape as she would like. She said that when that happens, it means that his neck muscles are still tight and are prohibiting the bones in the back of his skull from rounding out b/c they're all connected. Since it's been so long since she's seen adequate improvement in his head shape, she suggested the possibility that something else might be causing Josiah's torticollis since physical therapy doesn't seem to be helping as much anymore. She gave us a list of pediatric physical therapists who specialize in torticollis and encouraged us to have him further evaluated.

Of course, Josiah has been sick for the last month and a half (literally)... and I have been having a hard time doing his stretches consistently. So that would explain it for me since the orthotist had mentioned before that there usually is little improvement in head shape when they are sick. The body tends to focus on fighting off the virus, so they don't grow as much... or their head doesn't... or something like that. Not sure how true that is since I'm not a doc, but it would explain why Josiah's head shape hasn't been improving as much over the past month.

Anyway, it looks like we will try to see one of these specialists to rule out the other "possibilities." While we are not thrilled about having to see more docs/specialists, we think it's important to pursue just to make sure nothing else is wrong. Please pray for wisdom as we parent Josiah and walk down these other medical avenues.

band follow-up

We took Josiah to his first, weekly follow-up appt in the band. The clinician showed us a real life-sized mold of Josiah's head from the 3-D composite they had generated from the cameras. She took his band off and proceeded to feel the mold of his head. She said every week, she was going to feel the mold of his head like this (and demonstrated it for us) and then feel his head like this (and demonstrated it for us) for any changes. While she was feeling his head, she said she could already tell that his forehead was beginning to even out and that the flattened area on the side of his head was beginning to round out, too. After feeling Josiah's head, she would make the appropriate changes to the band.

I just looked at Bill with incredulity and disbelief. Uhh... Are you kidding me? What just happened here? Did she just feel Josiah's head and tell us that she could "feel" where it was changing in certain areas and that she was going to adjust the band based on what she felt? Where were the objective measurements? Did Mom just pay a hefty $3300 for a piece of styrofoam that they adjust based on what they "feel?" She could tell us whatever she wanted and we wouldn't know if she was telling us the truth. I could feel the heat in me rising... Man, they sure took us for a couple of suckers!

After the clinician stepped out to make adjustments to Josiah's band, I went off. Bill had to shush and calm me down b/c I tend to overeact about things... just a tad. =P He calmly reminded me that they have special training for what they do. (No other band or helmet company requires their clinicians to receive special training on how to use their band.) And they have hundreds of patients who come to them for the same thing. They know what they're doing... but we went into this knowing that there was no guarantee that there would be any improvement in Josiah's head shape. So even if the improvement is minimal, it's better than if we had not done anything at all. Even with the band on, his head will continue to round out on its own anyway. So we have nothing to lose. Ok... yes, I do remember us discussing those things.

I'm always thankful when Bill is there to remind me not to be a drama queen. It's not the end of the world, as I always make things seem. So I reminded myself to have charitable judgments, to stop being self-righteous, and trust that the Lord's will will be done. We (thanks to Mom) have done everything we can to help Josiah with his plagiocephaly. The rest is in the Lord's good, kind, more than capable, and loving hands. I can certainly trust the results (whatever they may be) that God has for us, knowing they will be what is best... best for Josiah b/c He loves him.

So no more drama queen when we go for our weekly follow-ups... I pray! ;)

happy 8-months, sweet pea!

Josiah is 8-months old!!! Can't believe how big he is getting! What has he been up to? Let's see...

Josiah is beginning to get onto his knees when he's on his tummy. He is VERY comfortable now on his tummy and can pivot around quickly to reach things. He still hasn't learned to sit up on his own yet, but is starting to occasionally catch himself when leaning over too far to one side. He still also loves standing and can sometimes "walk" when supported.

He loves to squeal and make high-pitched screams, especially when William is playing with him. The only other time he talks a lot is when he's eating. Don't know why that is, but I love hearing his little voice. He also likes to stick his tongue out while talking, which of course I find adorable. ;)

The physical therapy continues to improve his neck movements tremendously. But as I mentioned before, his exercises are like little wrestling matches. I hate making him so uncomfortable and distressed. It really makes me sad and weary sometimes seeing him so upset during his stretches. The pt said it gets worse as they get older... that they fight doing the stretches more. Great...

Josiah is a baby who sure does love his food. There isn't anything we've given him that he won't eat. Not only that, but he is EAGER to eat most of the time. Love his hearty appetite!

Smiles is still extremely tactile and hands-on. He likes to bite his lower lip and whatever he is holding automatically goes to his mouth, unless he has his paci. He tends to be very curious about things and loves looking at (and touching) new things. He can be very grabby and has a strong grip when he gets his hands on something.

Josiah has also learned to be a little more active during his baths. He knows how to splash now and get Bill all wet. =)

Most importantly, Josiah is doing AWESOME in his band, and we are continually thanking the Lord for His mercies and kindness in this. Josiah barely notices that it's on. We actually get to take it off more than we anticipated, and it's not as tight around his head as we had anticipated. So the Lord has been exceedingly gracious to us during this transition in the band.

We are so grateful for God's overall sustaining grace that has been so evidently poured out on Josiah's life. There are many points in his short-lived life that could have been so much worse, but weren't b/c of the Lord's mercy, kindness, and grace on him and us.

Bless the Lord, O my soul,

and all that is within me,

bless his holy name!
Bless the Lord, O my soul,
and forget not all his benefits,

who forgives all your iniquity,

who heals all your diseases,

who redeems your life from the pit,

who crowns you with steadfast love and mercy,

who satisfies you with good

so that your youth is renewed like the eagle's.

The Lord is merciful and gracious,

slow to anger and abounding in steadfast love.

He does not deal with us according to our sins,

nor repay us according to our iniquities.

For as high as the heavens are above the earth,

so great is his steadfast love toward those who fear him;

as far as the east is from the west,

so far does he remove our transgressions from us.

As a father shows compassion to his children,

so the Lord shows compassion to those who fear him.

For he knows our frame;

he remembers that we are dust.

But the steadfast love of the Lord is from everlasting to everlasting on those who fear him,

and his righteousness to children's children...

Bless the Lord, all his works,

in all places of his dominion.

Bless the Lord, O my soul!

~ Psalm 103:1-5, 8, 11-14, 17, 22 ~

day 3 in the band...

Josiah did his first 23 hours in the band and did well. Outside of his 1 free hour with the band off, we also get to remove it when we have to do his stretches. So that's for 15 minutes every 4 hours, about 4 times a day. If his skin is especially red, I'll leave it off for longer until it starts to subside.

So I use part of the free hour in the morning to give his head a break after sleeping in the band all night. Then he gets it off for 15 every 4 hours. And then in the evening, he gets it off for 45 minutes for a bath. We have to bathe him every day b/c it's important to keep his head clean since he sweats in the band a lot. We just have him in his diaper and sleeper/sleep sac (for his naps). Normally, he would have a onesie on, but we were told it was important to keep him cool since he can overheat easily with the band on. I always worry that he's getting cold, but he's always been warm so far.

Anyway, Smiles did great last night, although he did wake up a few times in the middle of the night. Fortunately, he just fussed a little and went back to sleep. He woke up with a lot of redness on his forehead, so I left his band off for a while until it started to go away. Other than that, he did well with having it on for the majority of the day.

Unfortunately, he has some other issues going on... he has a nasty diaper rash, and I found out the hard way that putting Desitin on really hurts him. So I haven't been using anything and have just been trying to let him air out as much as possible... but then he pees all the time. (I quickly learned to just try and keep him on a towel when he's airing out.) =) Part of the problem is that he's pooping all the time now... and I'm not sure why. It's just little flyby poops, so his bottom is raw b/c sometimes I don't know he's pooped b/c there's so little of it, but it sits there for a while b/c I don't have the best nose. He may be a bit constipated from all the vegetable solid foods he's been eating.

Josiah also has this weird rash on his torso, and we have no idea what's causing it. We've been putting hydrocortisone on it, but will call the doc if it gets any worse. He doesn't seem to be bothered by it though.

He's also been majorly resisting his stretches. We literally have a little wrestling match so I can stretch his neck the way I'm supposed to. It's so sad b/c he looks really angry with me afterwards. I really wish I didn't have to do them... He shakes his head back and forth vigorously to try to prevent me from doing the stretches. Then he'll wriggle and squirm in any position imaginable to try and get out of the stretch. I feel so bad having to pin him down most times now. But I keep reminding myself that I'm doing the stretches now for him so that one day, he won't need to have them done. Don't know if that makes any sense...

Please pray that the Lord would continue to sustain me through all that is going on with Josiah. They're all little things, but they are weighing on me, especially how little time I have with William. But I know that God's grace is available to William during this special season we're walking through with Josiah. I have to trust that the Lord is with me during my days. He has not given me more than I can bear and will be faithful to strengthen me in my weakness.

day 2 in the band...

Well, I had a rough night last night, but not b/c of Josiah. Our dear William woke up crying and screaming... moreso than usual. And can I just add... now that he can communicate and talk, it makes the crying and screaming 10 times worse. Before, I didn't mind the crying as much, but when he puts words to it and is also crying/screaming, it is really difficult to turn away. Not that we ignore William when he's crying at night, but we've found that usually, the more we go in, the more it wakes him up and keeps him up b/c he wants to interact with us, not just get comforted. Normally, he will go back to sleep on his own within 15 mintues.

Anyway, when Bill went to check on him, he said his mouth hurt. His dentist had said his molars were coming in (and he had had a fever that came and went earlier this week, which is not how his usual colds go), so we figured that was the culprit. We gave William some Tylenol, and he asked me to stay with him. I agreed to stay since it was Josiah's first night sleeping in the band. We didn't want William's banshee screams to wake Josiah. William doesn't usually ask me to stay anyway, so I was happy to do it to offer him some kind of comfort. I figured that I'd be able to sneak out later, but boy, was I wrong. William was up over the next few hours constantly moving around trying to get comfortable, wanting to hold my hand, trying to talk, etc. I was on the floor and he was in his crib, so I held his hand as long as I could, but my arm just started to weigh like a ton. And I knew he wouldn't be able to get to sleep without lots of moving around to get himself comfortable. Holding my hand kept him stationary, so I knew I was keeping him up. So I told him I couldn't hold his hand anymore b/c my arm was getting tired, but that I was still there with him. I tried to catch some sleep and just let him move around until he was comfortable. So when he finally fell asleep, I think it was around 1 am. I waited/slept until 2 am to sneak out. As I was getting up, some joint in my body made this loud crack and woke him up. He started freaking out when he saw me trying to leave, so I told him I would stay longer. From that point on, I tried to leave every hour, but he seemed to have a sixth sense and would always wake up and get upset. So finally, when it was 5 am, I decided to just stay until it was time to get up for the day since I really didn't want William's cries to wake Josiah up early in the morning. (It's harder for him to get back to sleep when it's early in the morning.) (Sorry again for all the detail... once again, it's more for my memory than anything else.)

To our utter amazement, Josiah slept through the whole night without a peep, except for when he was woken up by William's crying (but went back to sleep on his own) and woke up a couple of times in the early morning. Thankfully, it wasn't b/c of William... and he was able to go back to sleep on his own until I went to get him at 7:30. I was so exhausted today, but so grateful for God's grace and kindness in letting Josiah adjust so quickly to sleeping in the band.

His naps during the day went much the same way. Actually, he has never slept as long for each of his naps as he did today. For his morning nap, he slept 2 hours with one waking, but went back to sleep on his own. For his early afternoon nap, he slept almost 3 hrs (2 hrs and 50 mins)!!! In that single nap, he's slept more than he has all day when he catnapped. I kept wondering if he was ok and went to check on him once. He slept so much that he missed a bottle feeding and didn't need his last evening nap. I guess he was catching up on lost sleep.

Oh, and btw, we did check William's mouth today and found he has his 2 lower molars coming in. Poor thing...

And tonight, our Smiles went down for bedtime without a peep again. He woke up once with William crying and screaming again, but that's another story. =)

I just think back on Ephesians 3:20-21, continually thanking God for answering our prayers far more abundantly than we asked or thought. These last few days have really been a source of encouragement for me as we begin this season with Josiah's band... God's kindness in helping me to see such grace that is available for me, for Josiah, for our family. Thank You, Lord... for Your mercies truly are new every morning!

Now to him who is able to do far more abundantly than all that we ask or think, according to the power at work within us, to him be glory in the church and in Christ Jesusthroughout all generations, forever and ever. Amen.

~ Ephesians 3:20-21 ~

The steadfast love of the Lord never ceases;

his mercies never come to an end;

they are new every morning;

great is your faithfulness.

“The Lord is my portion,” says my soul,

“therefore I will hope in him.”

~ Lamentations 3:22-24 ~

first day in the band…

Josiah’s fitting at Cranial Tech was a painless process. They had to shave off certain parts of the band that were too low. But other than that, they explained how to clean the band and take it on/off. And after that, we were pretty much free to go. Here are a few pics of our time there…

This is when Josiah first tried on the band. You can see how the front part is sitting low into his eyes. That was one of the parts the clinician shaved off. My Smiles… You can see how excited William is to take a picture… Josiah, on the other hand, is having the time of his life! Josiah has a thing for William’s head. He likes touching it whenever he gets a chance.

Josiah managed to sleep in the car on the way home from Cranial Tech. In the afternoon, he was pretty much his normal, playful, smiley self... not really noticing the band was on at all. But as the afternoon progressed, he became more and more tired (since he missed both his naps earlier in the day). That was when he seemed to be really aware that the band was on and would get more fussy than normal. He always rubs his eyes and picks at his ears when he's tired and the band was in the way, so it seemed to bother him. When we put him down for his late afternoon nap, he just cried and cried. He would sleep in our arms, but when we tried to put him down, he would wake up and cry. Eventually, he wouldn't go to sleep at all on his own. =( So after his last feeding tonight, we put him down as we always do, and he went to sleep without a peep. AMAZING!!! We are incredibly grateful for the Lord's grace in this and allowing our Smiles to get some rest that he needs. Bill and I are preparing for a rough night if that's what He calls us to, but Josiah has been sleeping beautifully so far... =)
We are supposed to take the band off every 3-4 hours for 2 days. (Tomorrow will be the 2nd day.) This is to help him adjust to the band. And if we see any pink/red marks, then we leave the band off until his skin subsides back to its normal color. We need to call the clinic if there's any redness that lasts more than an hour. But if everything is ok, then we will start him on the band for 23 hrs/day on Friday. (Fun times...)
We would so appreciate your prayers that Josiah would continue to adjust well to the band, especially when it comes to sleeping. That's the only time it really seems to affect him. And also that there wouldn't be any adverse side effects (i.e. rash, sores, etc.). Please also pray for our hearts that we would be able to adequately care for him as he transitions during this season and that I (since I'm with him most during the day) would keep myself aware of any temptations to anger/frustration/irritation with the added responsibilities of the band. It's actually really low-maintenance, but things are quickly adding up during the day with Josiah's stretches and other things we have to do with him. Please pray that I would remember to turn to the Lord for His help during those times, especially when I'm tempted to just complain.
Here are some more pics of Smiles when we got home this afternoon…

An aerial view… A side view… (kinda) The space helmet… The back view… And his first tooth… (Sorry, I know this is a bit out of place, but we were finally able to get a picture of it.) And here’s the close-up… It’s still hard to see, but it’s there!