Friday, April 24, 2015

FDR is FIVE Months Old

Dear Frankie,




You are FIVE months old. You are becoming heavier, and heavier these days. Mama thinks you are in 15-20 pounds range. You are wearing 6 months clothes. The clothes are a bit big on you yet, however, length-wise, they fit you just fine. Baby clothes are funny like that. You are still being exclusively breast-fed. Mama isn't planning on giving you solids until month 6; once you have hit 6th month mark, then Mama will see if you are ready for baby-led weaning. It basically means you will be introduced to normal solid food rather than pureed food. However, if your neck strength is still weak, and you're having a hard time sitting up, then it's home made pureed food. It's wait, and see at this point, and a decision will be made by then. 

You celebrated your first Easter! You looked quite sharp in your little bow tie, and outfit, even though you were quite intent on expressing your disapproval by having three blow-outs in it. Mama managed to save it, then dry it, and put you in three times before she gave up. Silly baby, you. Soon, there will be more holidays for you to enjoy. 

You are in your cranial doc band full time now, which consists of 23 hours day cycle, and you have a one hour break from the helmet wear daily. During that break, Mama spends the time cleaning your helmet really well to get the stink out, and to wash your hair to get sweat, along with hair mats, out. Then she savors the time kissing all over your head, and holding you against her chest without the helmet being in the way until bedtime.

Much to your parents' surprise, you have adjusted pretty well to wearing your helmet. You rarely fuss with it on. Mama has been making sure you remain comfortable, and cool by putting you in light outfits. At the night, you sleep in a light cotton sleeper, and there has not been any trouble with you staying cool at night with the helmet on. 

You have been sleeping your crib for a month now. It has been a relatively easy transition for you, and it surprised Mama how easy it is for you to make the switch. This is where all the stuff Mama has learned from Forrest comes in so handy for your transition. Once you hear the music going in the background, and your belly is quite full from nursing, you are out like light, and stay asleep until your 3 AM feeding. You are usually up between 6:30-7:00 am with Forrest every morning.

Wearing a helmet to bed was a bit of an adjustment for you. The first night was rough on you, and you had a hard time finding your sweet spot to get cozy until you found that sleeping on your side was much more comfortable than sleeping on your back. Forrest started sleeping on his side around five months old, and he turned out to be just fine. Because of this, Mama, and Daddy weren't worried about you sleeping off your back as long as you were comfortable.

You don't miss being swaddled, and find your blankets very comfortable to sleep with. Mama is using the same trick with you that she did with Forrest. The blanket is tucked onto the edge of the mattress on the sides, which prevents you from pulling it out, and getting tangled with your blanket. With the blanket being tucked securely into the sides of the mattress, it feels almost like you being swaddled, and it helps your wiggly legs to be safely tucked underneath. You prefer sleeping on your side ever since you learned how to roll over to your right! Mama has yet seen you rolling to your left, which is your "bad" side.

You take between two to three naps a day. Out of three naps, you usually have one very long nap, and you don't have a predictable nap schedule down just quite yet. Once your nap schedule is more predictable, you will start sleeping in your crib instead of your glider. It is funny how as how you are becoming more consistent with your naps, Forrest is becoming more inconsistent with his naps, and Mama can't seem to win with having both of you to nap at the same time! 

You had a small regression with the helmet on. You tilted your head a bit more, and had difficulty with tummy time. However, with each passing day, you built your strength to hold up your head straight, and to lift your upper body off the floor during tummy time. Mama continued to find different ways to promote your neck, and upper body strength.

You had your second hip scan. It came back showing that you had some immaturity in your hip. The information was faxed over to orthopedic pediatrician to look over the result regarding your hip. Mama was told that if there was something warranted to be seen, then the orthopedic pediatrician was going to call your parents. Otherwise, this was something that has to be waited until your third scan around six months old. Because of a long time frame from this result to your next scan result, Mama, and Daddy decided not to worry about this until they had more answers about your hip.

Your next appointment with Dr. Karbon is not until end of May, which is your sixth month wellness check, and in the meanwhile; you are still visiting Dr. Katie for chiropractic care, along with doing physical therapy sessions with Dave, and you are doing great at both. You continue to receive PT at home by stretching, and doing tons of tummy time.

Your infant car seat carrier has gone into a retirement. Mama is not sure if that car seat, which had seated both you, and Forrest, will be used again for a third baby. So it is a bit bittersweet to pack up the infant car seat, and say so long to it. You are now riding in a style, and comfort! Your new car seat is Britax Marathon Cowmooflague Clickfit  car seat. You seem to be so much more comfortable, and less squashed in it. The challenge is since you are still unable to sit up, Mama has to figure out how to "transport" you from the car, and into places. This is where Ergo carrier comes in so handy! You are put in the Ergo carrier, and problem solved, Mama doesn't have to worry about figuring out how to sit you up in shopping cart, or having her arms get tired while holding you.

You continue to be such a sunshine in our lives. This is where your theme of nursery room, You are My Sunshine by Johnny Cash, come in so fitting. It is a metaphor to what is going on in your life. The grey skies represent your health issues, such as Torticillis, doctor appointments, PT sessions, and all the medical jumbo mumbo that you are overcoming like a BOSS, and you are the sunshine that shines through a storm of problems. You are always cooing, laughing, and smiling. It is not very often that you are unhappy. Even during your appointments, doctors, and PT coach are always commenting on how happy you are.

Yes, you are such sunshine in our lives. Please always be such a happy little baby that you are.

Love, 
Mama, Daddy, & Forrest

Wednesday, April 8, 2015

Cranial Doc Band

Frankie has been wearing his helmet for about a week now. It has definitely been interesting! Frankie has not thrown much fuss about wearing his helmet, and appears to have adjusted to it pretty well. He objects to having it put on for first few minutes as we fit him with a helmet, then after that, he's golden. 


On March 31st, we went to Hanger Clinic, and met up with Dr. Staci. It was a long appointment, even though time kind of flew while we were there. We learned how to put the doc band on Frankie, how to clean it, and regime with helmet wearing. Dr. Staci measured Frankie's head, and took a couple pictures as "before" pictures, I suppose. Frankie was measured at 24 MM. Dr. Staci shaved off the foam on the inside, then put on Frankie to see how the helmet fit. It took a few tries with shaving, and seeing how it fit on Frankie's head. 

Since Frankie's head was oblique, think of an egg oval shape, the helmet was a bit loose on him, and Dr. Staci had put on a soft foam pad with a Velcro sticker inside of the helmet on the back. It helped to stop the helmet from getting too loose. We only had the foam pad on for a week before removing it. Anyway, we were told to start the regime of helmet wearing immediately after the appointment by 2 hours on, and 1 hour off cycle until bedtime. 



As the days gone on, we increased the helmet wear by doubling the hours of having the helmet on (2 hours on, 1 hour off, then 4 hours on, and 1 hour off, then 8 hours on and 1 hour off, and so go on). For the first 5 days, we did not have the helmet on for bedtime, and gradually got Frankie to become comfortable with wearing his helmet. By the sixth day, we finally reached to 23 hours cycle with one hour break. It was also when we started having Frankie sleep in his helmet at the night. 

Now, the first night was pretty rough. Frankie had a very hard time settling into a restful sleep. I admit that I did not sleep well either, because I was constantly waking up to check on him, and making sure he was okay. I worried that Frankie was going to get too hot, or not being able to roll back and forth easily with the helmet on. I experimented with clothes for Frankie to sleep in. It proved to be difficult. Frankie had a thin long-sleeved onesie with nothing for his legs, but his legs got way too cold. If I had him sleep in a sleeper PJ, then he got too sweaty, and hot. By the third night, I finally found a perfect solution!

I used Gerber Boy Baby thermal flame resistant PJ. It was just thin enough to allow air to get through so Frankie wouldn't sweat as much, and it kept his legs warm! We also kept the house temperature at 67 degrees, and it was still kinda cool outside. Frankie was comfortable in this PJ, which made me glad. 

I got one issue resolved, yet we still struggled with Frankie's comfort at the night until I noticed that Frankie liked to sleep on his side. Thankfully, it was not his "bad" side. I debated whether it was really okay to let Frankie sleep on his side, because as SIDS campaign has stated that it was better for infants to sleep on their backs to reduce the risk of SIDS. However, I decided that it was just better to let Frankie sleep in whatever position that enabled most comfort for him while sleeping. If he wanted to sleep on his side, then so be it, you know. Besides, from what I remembered, Forrest started sleeping on his side around 5 months old as well, and he turned out to be just fine. 

We returned to Hanger Clinic for a follow up appointment. Dr. Staci measured Frankie's head, and found that he went from 24 MM to 20 MM in matter of just a week! His flat spot didn't look as flat anymore. I was really impressed. It confirmed our decision to go with helmet therapy for Frankie. It also resolved some guilt inside me for putting Frankie through such discomfort lately. We also had the foam pad removed since Frankie's head grew, and the helmet fit him better. He had some red spots (heat rashes), and I was told to use A&D ointment (a baby diaper rash cream). By the way, it worked really well! 


Dr. Staci wanted us to come in every two weeks for Frankie's helmet therapy progression, because Frankie was still so young (only 4 months old), and his head has been growing so fast. She wanted to keep eye on him, and adjust accordingly as he goes through growth spurts. I scheduled appointments in advance in May. So we had an appointment on the 17th this month, then two more in May. 

Then on June 1st, I will be sending in the helmet to be painted by Paula Strawn. Google her. She does fantastic painting job on the helmets! She also paints orthopedic braces for the back as well.  I'm quite excited for that. It's why Dr. Staci gave us the head model (as seen in the first picture) for the helmet to sit on when it is shipped to Washington to be painted. At that point, Frankie's head growth should be a lot more stable (he will be 6 months old) to not need helmet for at least 36 hours. It will be a nice break for Frankie too. 

Anyway, I'm hoping that having Frankie's helmet painted will reduce what I like to call polite stares from people. As a Deaf person, polite stares is something I am very used to. Trust me, after 30 years of signing, not a lot frazzles me anymore, ha ha. However, when it comes to my kid, it sucks. It stings. I prefer it very MUCH so when people come up to me, and ask about the helmet. I find more comfort in that. Yes, sometimes the comments are a bit far fetched, or silly, but it invites discussion, and education. I enjoy that. 

The helmet does smell something fierce. Frankie sweats a lot while wearing the helmet. His hair is always so soaked when I take the helmet off him, and the body odor is just quite terrible. To remedy the smell issue, I mix baking soda with a bit of water, rub it all over the plastic part of the helmet on the outside, then shampoo it really good on the outside, and on the inside, and dry it with a rag. Then I spray 50-50 of rubbing alcohol, and water on the inside on the foam part. After all that is done, I blow dry the helmet on COOL setting. It sounds lengthy, but it isn't. It only takes me under 10 minutes to do it. I do this while Stu holds Frankie after his bath (his hair needs to be washed, and dried really good too). It removes the odor no problem, but after so many hours of wearing the helmet, it reeks again. It sucks, but what can I do. 

If there is a magical remedy or method to keep the helmet smelling clean 23 hours, then share with me! I would love to know. 

Yes, there has been some regression with PT after Frankie got his helmet. I am told to do tummy time in small intervals, and not to expect so much from him in the beginning. If it takes 2 minutes for Frankie to do tummy time after every diaper change, then fine with me, and we can work on increasing his tolerance again. I usually like to put him on my lap to give him some width off the floor, and play a game on my Iphone. It distracts Frankie from being on his belly, and he enjoys seeing a moving object on the phone screen. Sometimes, if Forrest isn't too rowdy, then one of our cats like to lay next to Frankie as he does his tummy time, and Frankie likes to try reach out to the cat. 

Hopefully, within a month, Frankie should regain his strength to do tummy time, and tolerate it better once again. The helmet is pretty heavy, and bulky. So it takes him time to get used to build up strength for tummy time. 

AT least we are on the way to fix Frankie's flat!