Fragile X Friday: Folic Acid

"I didn't do it!"

As promised I wanted to do an update on Holly's progress with Folic Acid. She began taking it just after her birthday and I posted an introduction to it and her usage on March 20th. She has taken it pretty consistently since then. I mentioned some early developmental observations in April that can be found here.

Before I begin to reflect on her development I will talk a little about the medication itself. We originally filled a 3 month prescription at UC Davis Pharmacy that cost us only 20$ this was without using insurance. After about 3 months the liquid solution begins to lose potency and eventually goes bad, so you can't really get more then a 3 months supply at a time.

Folic Acid: Liquid
Preparation

Folic acid is manufactured only in 1-mg tablets in the United States. A liquid preparation of 5 mg/ml is more convenient and less expensive than the tablet form. Most patients who respond will demonstrate improvement on a dose of 10-50 mg/day. Many pharmacies will prepare the liquid preparation after a special request. Pharmacies can obtain folic acid powder U.S.P. through Tanabe U.S.A., Inc., 7930 Conroy Ct., San Diego, California 92111 (1-619-571-8410) or Mike Jones at Gallipot (1-800-423-6967). The following formula can be used to mix the folic acid solution to a dilution of 5 mg/ml (provided by Rob Rodgers, Pharm.D., at The Children's Hospital in Denver, Colo.): 10 g folic acid, 2,000 ml H2O (sterile), 15 ml NaOH 20%--add by titration until mixture clarifies in solution. Folic acid solution is sensitive to heat and photodegradation, and it must be refrigerated and protected from light in a covered or brown bottle. A syringe can be used to measure a typical dose of 5 mg or 1 ml twice a day. As folic acid is relatively tasteless, it can be squirted directly in the mouth or added to juice. The dose is usually given twice a day to avoid stomach irritation or diarrhea, which occasionally occurs.

Holly only takes 1 ml 1X a day. When taking Folic Acid, it needs to be taken in combination with a B6, B12, and perhaps Zinc. There have been some studies showing a B6 Deficiency when taking a high dose of Foliate, and when taking a high dose, the Foliate can mask a B12 deficiency. So a multi vitamin is recommended. When we first started the Folic Acid it was easy to find a liquid Multi Vitamin for infants that had these three vitamins in it. Our first hurdle was running out of the vitamins and no longer being able to find it in Liquid form, it seemed suddenly all the multi-vitamins were children's chewables, or instead a D supplement that didn't include the B Vitamins.

During our first 3 month period Holly went about 2 weeks without the supplemental vitamin, while we were searching for a replacement. The second hurdle we faced was getting a refill after the first 3 months. We originally intended to go to Elephant Pharmacy, but they recently closed down and that wasn't an option. So we instead went to a little compounding pharmacy called Abbott's. This was where I got my Domperidone when breast feeding. Anyway, they said they could transfer our prescription and make the medication (after Walgreen's, Longs, and Safeway declined) but the cost was 70$

So my choice was to drive up to UC Davis, 3 hour round trip, gas, time, inconvenience, or pay 3.5 times the cost of what I got the medication for the first time. Abbott's doesn't take insurance, so it was simply a cash payment. In another 3 months or so we will be making another trip to UC Davis, so we can do another refill at that time, and revisit the dosage (as it is based on weight)

So the question is, do we think it's making enough of a difference to continue giving this to Holly every day. Right now we put a dropper full of vitamins and 1 of Folic Acid in her second bottle, usually taken before her nap, she doesn't even notice it. Also, as she begins to ween herself off the bottle, how will we continue giving these to her? The cheek method immediately makes her throw up.. But I digress.. you of course want to hear my thoughts on her development.

Well.. Before her birthday she had an assessment by 2 Speech Therapists and a Feeding Therapist. Her Speech Therapist evaluation put her at a 6 month level, showing a 6 month delay. 8 weeks later (while taking Folic Acid) we start to receive services, and the Speech Therapist does agree there is a delay, but sees significant improvements. She babbles using a variety of sounds interchanged, and a conservative estimate is at least 50 words of receptive understanding, she also has begun to learn a few signs. We started signing with her when she was 6 months old, she never made any attempts to make the signs before. Now, we can prompt her with a wrist tap and she will sign "open" when she wants us to open a toy and play with us. She has also signed milk a few times, and eat, and I think sleep.

Some of our speech therapy goals include verbal imitation, such as repeating back sounds she can make like "Ba Ba" or "Ma Ga" she will have a back and forth conversation with you, but she doesn't repeat the sounds you make. Another goal is to make a few new sounds such as T and C. It is surmised that with further tongue "exercise" she can begin to make "back mouth" sounds. She gets this exercise by eating more sophisticated foods.

That's where the feeding therapist comes in. While Holly still has gagging issues, the Feeding Therapist felt as if she had transformed during the 8 weeks since she did the evaluation. She says the lateral tongue movement is increasing and she is chewing more, and she has even eaten bits of meat now. Next we will be working on mixed textures which is more related to her sensory issues.

Some other things, her focus and intention.. One might say she is a little hyper or ADDish but I think she has a lot of focus for a task she wants to do. She will now sit and try and figure something out and she is learning and mimicking activities. She puts toys away when told, and initiates play and games. We recently did "This Little Piggy Went To Market" and she will take my hand and put it on her foot to do it again. She will bring a bag of blocks to Joel to get him to open them, and "tantrum" when we don't play, and with a prompt ask that we open them with a sign, even though her intention is already clear. She is beginning to stack blocks, which she can do, except that her movements lack fluidity due to her high tone. She is shape sorting in an emerging way. Before she would give up after 1-2 seconds, now she will twist and turn the piece to get it in (She never used to do that0. She hasn't learned Square is Square, but if the right shape is near the right hole, she will turn and manipulate it until it goes through. On her pop up animal toy she has learned all of the levers, including the turning one which is advance, and the up/down, and side to side in both directions.

She also is investigation. With intention. She will take all of the pasta out of the drawer, place it in a bag, carry that around for a while, then put it back. She will get the granola bars out and put them into her plastic bins, and hide them around the house, very intentionally. When she recently learned to drum, she was very curious about using the mallet on a number of different surfaces, first the drum, then a plastic container, but what does it sound like on the piano, and the carpet, and her house, and the chair, and the table. And then when she is done, she puts the mallet back where it belongs int he container.

She has begun to feed mommy and daddy and her therapist observed her feeding a doll. She will take two puffs, eat one and place one on the table for later. Remember where it was and come back for it. Just this week, she is beginning to put the spoon inside the empty yogurt container and then into her mouth, and imitate "feeding" She very distinctively tells me know, and either understands the verbal question I am asking or the visual Que, Such as do you want milk, juice, yogurt, are you hungry. She will shake her head for one but then open her mouth for another, actually answering the questions and communicating what she wants.

She is fascinated with trying to learn how things work. We have a ball pit, which she loves, and one of her favorite games is throwing the balls out. She likes to see them bounce. She has other balls too, and she has begun to drop them, to watch them bounce and roll, but then she has other "roundish" shaped toys, and she drops them too.. Does this one roll, does this one bounce, what if I do it on the rug, what if i do it on the wood floor, what if I do it in the kitchen.. and on and on her investigation goes.

When she needs a break and wants to watch Baby Einstein she hands me the remotes. When she is hungry she has begun to go to the refrigerator or high chair to let us know its time to eat. She listens when I say edge, or yucky, or even if I subtly shake my head no, she will most of the time put down the thing she wants to stick in her mouth, though, sometimes her impulse is stronger, but she certainly knows, by the mischievous look on her face that she isn't supposed to be doing that. She will walk into another room, that she isn't supposed to be in, and wait for me to look and see her go in, with a little snicker before running off. Sometimes if she really wants my attention she will turn my face to look at her. At the park she runs to the swing when she wants to swing and hold her arms up so we can put her in. The list goes on and on and is endless..

I know Folic Acid has been recommended for a plethora of behavioral, mood type issues, and I really haven't seen any of those with Holly yet. Maybe this is helping to keep them at bay, maybe they will show up when she is 4, maybe they aren't one of her "spectrum" issues. I do know that I can push her. She has issues, she has sensory things, like (sadly) she has recently started to cry when a group of people sing "Happy Birthday" Since we have been going to so many parties lately it is a bit of an issue, not sure what it is, overload, everyone doing it at once? We are int he room full of people and conversation and loud noises and she is fine. Then as soon as everyone sings together, she gets upset, makes the face and cries. She also doesn't like to be Dirty, that is relative for a baby, she gets pretty dirty, but she likes me to take sand and dirt off her hands and recently she freaked when she got paint on her hands. Is it sensory, or a control thing, she wasn't the one putting the paint on her hands, and she tantrums when she wants to be in control and isn't. is this a Fragile X thing, a baby Thing, a I'm just like Mommy thing, who knows.

The thing is, she is my only child. Many of our friends are 3-6 months older or younger then her. Since she is so mobile, and many are just learning to crawl or walk, she seems advance. But then she doesn't clap, or wave. She will take hold of my two hands and clap them together or take hold of my finger and move it to point, but is only just barely pointing herself, and that is at a picture in a book, not an object int he room, she doesn't yet know to follow a point, and while she does have joint attention, she doesn't always follow a gaze and a point when I want her to turn to look at something.. I see even the much younger kids doing some of these things.. Just recently a friend with a just 1 year old told me they counted her son;s words and he had 30 expressive. So I know there are delays, but often I don't notice them, because she holds her own, and i don;t expect her to be as sophisticated as the older kids, and in some ways the younger ones aren't keeping up, so other parent's don't notice.


For example, she will climb the stairs, sit on the platform, wait her turn and go down the slide. There are 18 month olds not really doing that, but then, she can;t wave bye bye... Yet I digress again.. The point of this is Folic Acid, and my point is she is Holly, I have no way of knowing if this is the normal progression of development for a Now (OMG) 15 month old, and if her progress is moving ahead at a steady pace, or if she is making leaps due to the folic acid, or perhaps it is a result of her therapies. What I can say is that It does seem like she has been making some jumps lately in understanding and imaginative play, and exploration, whether this is when it would have happened, or if the medication pushed it along allowing it to happen with such great leaps and bounds, I can;t say, but I know this, Folic Acid isn't hurting her, and if there is any chance it is contributing the the amazing development I see daily, then it is worth her continuing on the medications. There is no downside, not as far as I can see.


Now if you are looking for a magic pill to lull your child out of stagnation, I can't say this is the answer, I don't know, and my understanding is that every child responds differently anyways. So I know perhaps it is a bit of a cop out to say, I just don't know, but what I do know is it was worth 70$ to keep giving it to her another 3 months, because what if it is making a difference, why take that risk, why not try everything that could possibly help her just a little bit. So for now at least, she will continue with the Folic Acid.

"I was just cleaning up Daddy's mess!"

Book Club

Last week was another meeting of the Book Club Mom's group I am in. This month we read a book called Buddhism for Mothers. There are actually two of these, one called ; for mother's with young children, and the other I guess is for older children. Difference members read different books, so there was a bit of confusion. The book was originally supposed to be, Our Babies, Ourselves, which I purchased two months ago, but that was swapped and postponed until July.

So I actually didn't have the book, and due to the confusion, neither did another one of the moms. I tried to order it from Barnes and Nobles but one version was back ordered and the other was supposed to come in but they never contacted me. It was a good conversation none the less, and it was interesting to hear what the other mother's thought of the book. I was much more comfortable with the group this time, and it was a much better experience, they were nice and welcoming, and perhaps since I didn't read the book, I wasn't driven towards debate.


There were still issues, for example the house was still not baby proofed. The mom left the back doors and front doors open, there were sockets uncovered decorative glass jars and bottles on the floor and fireplace hearth, and now that holly is walking it was much more of a challenge to pin her down. I don't like to tell her no, and she doesn't hear it often, so it is difficult for her to understand when she can;t explore, when for the most part she has free reign over our house and most of the places I take her. That said, a mother of another 13 month old (who was at home napping) helped chase Holly down a lot when she tried to sneak off into the kitchen, or down the hall way to the steps, up from the sunken living room.

There still were not a lot of toys for her to play with. there was the neat wooden sorter, and "swing set" toy and a small bin with a few other chewers and books. When I was actively playing with her she was engaged and easier to manage (read - distracted) but that made it hard for me to hold a conversation and pay attention to what was going on. the other two babies were about 7 months old, and not moving yet, so they didn't have a problem, and when they were pretty entertained, they kinda stared off or chewed on a single object.

next month we are reading playful parenting which i already have, and I am looking forward to starting, and we are having the book group at my house since the regular mom will be out of town. it should be interesting to see what they think, since they are anti-plastic (like bouncers and exersaucer's are "bad" - but we will see if they change there tune when there kids walk) But hey.. Who cares what they think right?

Unconditional Love

So I am in a new play group. Well Mother's Group, Well No, a Book group of Moms who have Babies. Maybe you can tell I haven't made my mind up about the group yet. The other babies who were there were 6-8 months old, not very mobile, Thus the house was completely unchildproofed and there weren't really many toys either.

So Holly was a little bored and hard to contain. Within minutes she knocked over someone's glass of water and almost broke the glass, but I mean seriously a new mom should know better then to leave glasses of water on the floor. Well Holly got all her cloths wet, so I had to change her.

One of the moms had a 1 year old but didn't bring her. Another it seems had a 33 yr old and as there mostly just for the book club part. Also the moms were practicing Elimination Communication, "Part-Time" I bit my tongue, its not that I didn't think it was cool that they were doing it, but from the other moms I have talked too it is something that takes 120% commitment.

I am also not convinced that having a discussion topic for a play group is a good idea, for me anyway. Rather then my relaxed and playful self I seem to get a bit competitive it seems when I am discussing something like a book. Joel sys he remembers me from how I was in class in college, I can be aggressive and opinionated, so I also fear I may not have made the best impression of myself either.



Then there is the book we read. It was sorta life changing, a complete paradigm shift, but overwhelming and frustrating and really hard to wrap your brain around.

So its called, "Unconditional Parenting - Moving from Rewards and Punishment to Love and Reason"

From the website: http://www.alfiekohn.org/up/index.html

Most parenting guides begin with the question "How can we get kids to do what
they're told?" -- and then proceed to offer various techniques for controlling
them. In this truly groundbreaking book, nationally respected educator Alfie
Kohn begins instead by asking "What do kids need - and how can we meet those
needs?" What follows from that question are ideas for working with children
rather than doing things to them. One basic need all children have, Kohn argues,
is to be loved unconditionally, to know that they will be accepted even if they
screw up or fall short. Yet conventional approaches to parenting such as
punishments (including "time-outs"), rewards (including positive reinforcement),
and other forms of control teach children that they are loved only when they
please us or impress us. Kohn cites a body of powerful, and largely unknown,
research detailing the damage caused by leading children to believe they must
earn our approval. That's precisely the message children derive from common
discipline techniques, even though it's not the message most parents intend to
send. More than just another book about discipline, though, Unconditional
Parenting addresses the ways parents think about, feel about, and act with their
children. It invites them to question their most basic assumptions about raising
kids while offering a wealth of practical strategies for shifting from "doing
to" to "working with" parenting - including how to replace praise with the
unconditional support that children need to grow into healthy, caring,
responsible people. This is an eye-opening, paradigm-shattering book that will
reconnect readers to their own best instincts and inspire them to become better
parents.

So here is the deal in theory I really get what the book is saying. He presents this amazing argument over several chapters so you can logically see how the carrot and the stick is damaging and how almost all conventional parenting falls into one of those two categories.

The thing is, he writes for about 9 chapters about how everything we all do is not ideal and then in the last 3 chapters when you are desperate for the alternatives he leaves you wanting, saying that every situation is different and there is no how to and using these tools you can figure out what to do. Well maybe I am just not smart enough to figure it out, but it really left me empty and frustrated, knowing I didn't want to follow the traditional path that he convinced me was bad but not sure how to do it another way.


The main point I guess is to have a conversation with your kids on and about every situation Don't say good job, Say you just put the block in the box. Don't say don't throw the toy, first ask yourself why you want your child not to throw the toy. Will it hurt someone? If not then maybe your request is just controlling. But if there is a reason, explain the reason, or ask the child why they are throwing the toy, ect. Work with your child do not control them, don't focus on the behavior but instead the underlying cause. Maybe your child wants more attntion, or is upset for some reason. So in theory this can work, it is a lot of extra work, but worth it.

My problem is that I simply don't know how to do this in practice with every situation. So anyways, Joel is going t read the book, and maybe he can make some more practical sence of it. I will post ore later.

Busy Week

This has been a very busy week for us. On Monday I attended a Positive Parenting workshop at http://www.bananasinc.org/ Banana’s, which is a great organization, BTW if you are local. It is a 6 week session, no babies. The first night Joel stayed home with Holly, as I originally thought she could come but found out last minute there is onsite childcare but it was “full” when I arrived there was plenty of room for her, but it was too late by then, so next week Joel will be attending with me, and we will see how Holly handles being away from Mom and dad for about 90 minutes, playing in the next room. The class is lead by an MFT and there are about 15-20 parents. We basically talk about parenting in a positive way, like rather than saying No all the time, say hands in lap, or redirecting. It is a very interactive workshop and the group has kids from 7 weeks to 8 years old and each has different issues they bring to the table to talk about. I look forward to future sessions.

One of the reasons I am also looking forward to this, is from what I have heard about the Spirited Child Series. The other mom’s like to call Holly Busy, and Active, but I can tell already her temperament is “spirited” so I am hoping to learn many discipline strategies now before I need them, so I can set them in place and well be proactive, because I’m like that. But I fear it may be too late in some cases already. I guess that’s why they say the first baby is your practice child.

On Tuesday I had a WASC Review which was sorta fun, as usual I enjoy doing the academic and educational stuff, just to keep me on my toes. This week I also got around to doing my taxes which was crazy, as I thought I was prepared, and I thought I scheduled the appointment at a time when Holly would be napping, but things didn’t work out how I planned. First I didn’t realize I needed her SSN, and I didn’t have it memorized, well I had, but wasn’t sure, and I thought my mom had it but she couldn’t find it, so I had to call Joel to go home and get it. Which was lucky because I found out you could deduct the cost of daycare, but I needed the tax ID number, and a few other items. In the end I got it done and filed so I was excited. But Holly was not asleep, so speaking of a “spirited” child. What was supposed to take me about 30-45 minutes actually ended up being 90 and Holly cruised and crawled and explored all over the H&R Block office. My tax Guy joked to a colleague that he was a babysitter tonight, as several times he had to hold Holly as I searched for some paper work or called Joel for information, and even more times than that he had to help pick up the many toys she threw off the desk onto the floor, or the other stuff she decided to drop. The other clients were also very amused and she wandered over to say Hi and explore the office. It certainly was a preview of what is to come, once she can actually walk, I swear I will need a leash.

We have made good progress on the eating front, or at least I have been. Joel has been able to feed Holly Yogurt in the morning, at least a half container usually, but he has not had any luck with other feedings. I on the other hand have gotten her to eat entire jars. Just this week at one feeding Joel gave up after about 5 bites of Pear/Blueberry and 20 minutes later I tried and Holly ate ½ container of Pear/Blueberry, finishing it, and then an entire container of Spinach Potatoes. Joel was in shock. I read an article the other day, which reassured me I was on track. It mentioned a few strategies I have been using, and they seem to be working. One is letting her hold her own spoon. I had started that months ago, but it was nice to see it in print. The next is to distract her with finger foods. While she is busy picking up and trying to eat them, you can slip in bites of food between, and she gets to practice her fine motor skills. Finally it suggested letting her practice with a Sippy cup, and feeding between sips. I have only tried that a few times, but will continue as she begins to understand that she can get liquid and its good.

I thought I was bribing her to eat, but Joel says I am rewarding her. My most successful strategies is using puffs. I give her the first few bites, which she almost always takes without resistance, and then she begins to shake her head no. So I show her a puff, and say, Holly if you want this puff you need to take a bite. She tries to grab it and I don’t give it to her, I repeat, and then she usually opens wide and I give her a spoon. Sometimes I say two bites, or three, depending on if it is food she like more or less, and then give her the puff. When Joel was feeding her the other day he realized that I taught her open without realizing it. He wasn’t really saying it and then said it by accident and she opened for him. So now he tries to say it more, but she doesn’t always want to open. I think Joel is less constant and gives in and gives her puffs anyways, so she knows he doesn’t mean business. So I assumed I was bribing her with Puffs, but Joel says it is rewarding her for doing the behavior I want, taking a bite, and it is a great way to get her to eat.

She is also slowly expanding her repertoire. We had Mac and Cheese Veggie Dinner the other day which she liked, and she is eating some pasta, and really beginning to like cheese. Next week I am going to give her salmon and peanut butter (not together) based on an article I read about how the Salmon can help prevent allergies, and how you should start peanut butter early, rather than later. But I will give it to her on a cracker though, as a glob of peanut butter is a choking hazard.

The other thing we are doing is mild sleep training. It’s a Hybrid we made up between the cry it out and no tears method. Another article I read say the trade off is time or crying. If you have a lot of time to get your child to learn to fall asleep on her own, like weeks then eventually the no-tears method will work, but if you need your child to learn in a week or a few nights even, then you get a lot of crying, but it happens fast. We just spoke with a family who did this and said it took only three nights. Night one was an hour of crying, night two thirty minutes and night three only a few. Now there son is sleeping on his own. Well we certainly can’t stand to have holly cry even 5-10 minutes, so that won’t work for us, but a little whining, and 1-2 minutes of crying is ok. So we have been putting her in the crib and she plays, for about 20 minutes and then wines, if she is whining we let her continue, once it turns into a cry we go in but do not pick her up (at first at least) usually I can calm her by rubbing her back and “hugging” her as she stands on the rail of the crib. But she reaches up wanting me to pick her up, and even that is heart breaking. I mostly make Joel go in, as she whines to him a lot, but isn’t as desperate and having a crying fit usually. She gets pretty sleepy and he had a lot of hope that this would eventually work. We do this for about an hour. Starting at 10:00 usually at that point, I pick her up and we have watched Baby Einstein and she falls asleep within minutes.

But this is the thing, getting her to fall asleep on her own is secondary to getting her to bed the same time every night. So the other thing we have done is try and create a bedtime routine. Bath (some nights) some Baby Einstein or playtime in Mommy’s lap. After 9:00 most nights we try not to let her crawl and cruise around on her own, as it keeps her keyed up. We tried story time, but the books seem to rile her up, as she gets excited about turning the pages, so we have tried “telling” her a story and singing a song. Then by 10:00 I give her a bottle in bed with me, and hope she falls asleep. Some nights she does, some she is settled, and if I rub her back and head a few minutes she falls asleep. If she is in an active mood where she wants to jump up and won’t stay in bed, then we put her in the crib, and do the “hybrid” method from above. So far we haven’t gotten her to bed by 10:00, but most nights now she is asleep by 11:00. So my question is, is that her natural bedtime, and I need to move late afternoon napes up, or cut them out, or do we need to move up our start time to 8:00 if we want her down at 10:00. I suppose if I can get her to bed at 11:00 every night and then slowly move it earlier, it’s a start. What I plan on doing after a few days of this working well is maybe feed her in the rocker instead of the bed and when she is sleepy but not asleep put her in the crib and see how that works. Oh and yes, lastly we are no longer letting her sleep-in in the morning, mostly. We try and wake her every morning at 8:00 AM. That means though, that Joel has to be awake, so it has been 8:00, 8:30, 8:45 some days, but we are working on it. I think a morning routine is also necessary for her to take her morning nap and be productive at Therapy., so I am in process of creating an entire daily schedule for a guideline, I don’t plan on being stringent, but having it written out helps remind us what the routine should be, even if we don’t follow it every day.

On Friday we went to swimming and had a blast as usual. Holly is starting to not like being tossed up in the air. She used to love it, it was her favorite part of swimming. We would jump up and down when the windows on the bus went up and down. I try it but then sometimes she makes a face that tells me she isn’t having fun, so then I don’t jump up any more after that or let go. I still lift her just above my head, and she still likes that. Maybe she is cold. It is hard to tell. After swimming I was on my way to get a new toy for Holly off of Craigslist, it is a Giraffe that you put a ball into the mouth and it twirls around and drops out of one of four exits. It was only 10$ but it didn’t have any of the balls. I thought our Bubble Gum balls would fit, but they are a little too big, so we need to get some smaller ones. The toy is normally like 39.99$ though, so it is still a good deal I think. It ended up being the same person I got the exersaucer from a while back. Well anyways, on my way I was stopped at a light and I had called my mom and a cop pulled up at the other light. I hung up when the light changed green, but a few minutes later he pulled me over anyway. He said it was from talking on the phone, California is pushing a zero tolerance policy and I said, well I wasn’t driving, I was stopped at the light I didn’t realize that wasn’t ok. He said, well you are also not wearing your seat belt. So he gave me a ticket for that. Well I am short, 5 foot, and the seat belt basically cuts across my neck and face and is dangerous to wear, so I show him, and say what do I do? Can I wear it behind my back or under my arm, and he says no that is also against the law. And I have to by one of those seat belt adjustment things, but in the mean time, he can’t tell me not to wear it, but I should do what is safest for me, and he will drive off before I leave. So he basically told me not to wear it. Go figure, so now I have to figure out how much the ticket is for.

We also had Xray's done and went to UC Davis Mind Institute this week, I will update you on this tomorrow.

We're Back!

Wow… it has been a while since I posted a daily update type post. We actually had a really good last few days now that Holly is back on the mend again.

Regional Center:

So I have been battling with them to get approval for speech therapy and respite. I was denied on both cases and went into appeal mode. Here is the thing, while I understand the policy on Respite and agree Holly probably does not present with extra ordinary care needs compared to other 11 month old children, it is the principle of the thing. Another mom in another Regional Center in this state received 22 hours of respite without even requesting it. My Regional Center said they typically do not ever give this to any children under the age of 2 unless they have a physical disability that requires special care, so I can accept this, but why is this done inconstantly from one regional center to another within the same state with the same funding issues?

I am of course very happy for this other mom, and I will try again but the way this center is I may never qualify. I think I have ranted about this before so I will move on to the goodish news. I received a call today from my case manager telling me that her and the supervisor are bringing my request to their Director to try and make a case and bend the rules and get Speech Therapy for Holly. This was another principle issue for me, because this same other mom will get Speech Therapy services starting at 12 months, and one mom even told me in her state it starts at 6 months. But originally my Regional Center said there is no benefit of Speech Therapy until 18 months old. This prompted me to email her asking what all the speech therapists were doing in other regions that was of no benefit to those kids who are younger than 18 months and if she could instead get me an evaluation and have the Speech Therapists report tell me that services would be of no benefit even though I already have a referral from a specialist and her Pediatrician.

I also wanted to know what the next step was to make an official appeal of the denial of services which would most likely include the need of a mediator, so perhaps my Case Manager thought if she could make an attempt to bend on the Speech therapy I would drop my complaint about the respite and we would all be happy.

So the drama is that my new insurance basically sucks. I have been trying for months now to get in to see Aimee Bord the Speech therapist who works with Randi Hagerman. My Insurance changed before I could get in to see her and then the person who does the scheduling was on jury duty for 3 months so she never got our new insurance and Aimee was booked. So finally she has room to see Holly for an evaluation and they were trying to get authorization but were being delayed. So when I called the insurance company they said that my Primary Care physician has to submit the request for Authorization first.

I realized this would affect three upcoming appointments, Holly’s X-ray, Her Speech Evaluation, and our visit to see Dr. Hagerman. So I called my pediatrician on her cell, she is so great, and she is trying to take care of it all. But the insurance won’t cover Aimee, so she instead gave me a referral and approval to get a Speech Therapy Evaluation Locally. She took care of the issue with the X-ray and did a request for Dr. Hagerman but is almost positive it will be denied and won’t go through by next week’s visit, so I have contacted Dr. Hagerman’s office to see if we can make the visit a research visit instead of a clinical one. They just assumed and made it clinical this time because the last three times we were there I was on different insurance and it was covered.

But the issue here is that when my Regional Center Case manager called me what she said is that she needs a report from Katie our OT recommending Speech Therapy, and from Dr. Hagerman. Also if I have a Speech Therapy Evaluation already she has a stronger case to get approval for the actual services. So hopefully I will be able to get all of this straightened out in the next week or so.

Well onto the more fun stuff. On Thursday we went to Tumble and Tea. She had a lot of fun but only enough steam to last about 2 hours and then got cranky and sleepy. When we left she fell asleep in the car within 5 minutes. I let her nap and chatted with my mom while we waited for Joel to get off of work.



We met two other little boys who were also 11 months old. Vincent was very adorable with bright blue eyes and lots of blond curly hair. He was very mellow and quiet but quite a climber. Holly had a lot of fun playing with him. He wasn’t used to other babies and this was one of his first outings so he was a little intimidated by Holly but she was friendly as ever. The other little boy Aiden had just moved here 6 months ago from Korea and wasn’t cruising yet. He had one of those toys where you push the button on the top and it spins. He wasn’t quite sure how to use it and Holly saw him playing with it so she crawled over pulled it out of his hands set it down pressed the button to spin it and then crawled off to climb on the jungle gym. It was so cute. She was showing him how it worked.

We also played in some new areas, the symbolic play room has a little kitchen set up and Holly had a lot of fun cruising around the kitchen opening the refrigerator and the stove and turning the dials and getting to play with all the appliances she never gets to play with at home. She also was quite happy to be in the middle of the big kids watching them play, but I doubt they enjoyed her getting in the way and traveling under foot. In fact she got hurt, it of course lasted about 5 seconds, but she was sitting near the stove and trying to push it in and a little boy was trying to pull it open. He won and she wasn’t happy.

She is also really starting to begin tantrum behavior. Here are two examples. She was trying to push one of the little cars and there was another little girl, older who wanted to rid it. Holly was pushing and she was holding it in place refusing to let it move. First Holly grunted at her and then growled she kept trying to push the car and was getting more and more angry then all of the sudden her face turned went to a frown and she wailed. The little girl’s mom said, Honey maybe you should let the baby play with that toy, and she did. But once Holly got her way she pushed the car for about 5 seconds and 8 inches and then continued climbing and cruising on her way.

Later she was playing with a doll in a cradle she was trying to take the doll out and its arm was stuck in a way that you would have to twist the doll to remove it. Well she tried to bruit force it out, pulled, banged, tugged, tore and dumped and had no luck getting it out at all. Then she looked at me and made the face again and before I got to her there was the wail again. I got to her and said, “Holly, are you frustrated?” Would you like some help with that?” I then removed the doll and handed it to her. She grabbed it out of my hand and immediately began to maul it chewing its arm and head with a vengeance, then tossed it aside and went on to the next toy. I tell ya, I don’t know what I am going to do with this girl when she can actually throw a tantrum if she is like this already. It is still cute though, but I am sure when she is 3 it won’t be.

The other thing we played with at Tumble and Tea was the table of latches and levers and slides. She loved this and had a lot of fun opening and closing twenty little doors and chewing on lots of little metal pieces and pushing and sliding wooden pieces around.

So even though we were there only about 2 hours we had a lot of fun.


That night Joel took me out to eat. I haven’t been out to a real restaurant for a long time. We went to Barneys which was my choice and I was craving the garlic skinny fries and chocolate Oreo shake. Holly ended up waking up as we walked into the restaurant, so our meal was quick but we put her into a high chair I gave her a bottle and then we asked for a slice of cheddar cheese and I Cut it into little bits and put a few in her reach at a time and she snacked on them through the entire meal and stayed content and happy. She is such a good baby!

Just a Rainy Day

It’s been a lazy rainy day. Sally came over today and she got to chase Holly all over the house and was very impressed with her mobility, especially all of the “squatting” she does. She brought over the red horsey for Holly to bounce on and play with and had a chance to stretch out some of her muscles and said she seems to be getting a teeny bit looser. She played some reaching games with her and saw some good head extension and reaching, but now she is extending her head only at the neck not arching her upper back between the shoulders. That area is still super duper tight.

She worked on some rotation, and some cause and effect playing. She was working on “Push” and getting her to push some of the toys she has. The Little Orange Panda pops out when you push him, and we have another toy then you put the top the little balls inside all spin, and finally there is one shaped like a top and when you push it the entire things spins, and it plays music. It has 4 little animals and when you press each one it says, “I’m the Lion” or “What Sound Does the Monkey make” ect. It is a pretty cool toy, as once Holly has some more language skills, it asks her questions and gets her to keep playing, like “Can you find the Elephant”

Holly got a bit cranky about ½ way through the session because Sally restrained her when she was trying to crawl off to her room and she didn’t like that one bit, and then afterwards she has been fussy. We got a nap today for about 90 minutes but she seems tired again. We just had some Green beans and Blueberry pear for lunch and now she is lying in the next watching Lullaby time, I don’t think she will fall asleep, though she might, but she seemed to need the down time.

Yesterday she slept in till 10:00 so she only took 1 nap from 3-5 and was up until about 10:45. I was worried about her this morning though because she woke up crying at 7:30 and was really hungry, so she only got 8.5 hours, and she needs 12-14 a day according to the literature, and she often sleeps a minimum of 10 a night. After her bottle she went back to bed but only for another hour. I think she is either going through a growth spurt, or maybe coming down with something.

I suppose a better mother would keep her warmer, but she slips and slides and pulls off her socks or has trouble crawling when she is wearing PJ’s with feet, so I let her play in what’s comfortable even though her feet and legs sometimes feel cold. But her core is still like a little heater, her feet will be cold but her belly is toasty, and her head, so I guess she is fine. The last two days she has been having a bit of a dry cough, but I think maybe it is like an allergy, I have been coughing since Sunday because our friends have a cat and I am allergic, and I think she is copying me. She is up and playing some more, I guess she was tired of sitting still.

Yesterday we ran a few errands; we had to go back to the Plastic Store and re-cut the doors as they needed a bit more room to allow space for the hinges. I need to correct that the doors are not actually Plexiglass, but clear Acrylic. Joel has informed me that I could hit it with a hammer and it would not break, and it does not shatter, so they are super safe.

It was much more complicated getting the doors right and everything lined up, but Joel was such a trouper and stayed up till 2:00 last night and finished them. The magnet latch isn’t strong enough for her to not open them, so we added the Baby Proofing Cabinet latches which we were expecting to do, and today she was able to cruise all along the entertainment center and try and open the doors and kiss the “glass” she was quite pleased.

Have I mentioned that she is starting to show more emotions, such as Frustration and Anger? This is a great developmental milestone, though a hard one to deal with. I don’t want her to be frustrated or angry, but then I also can’t just rush in as soon as something doesn’t go her way and I have to let her fuss and cry it out sometimes, which is very hard for me, as she is a baby who never cries unless she needs something and then her need it met almost immediately.

But an example of this would be the blinds. Now that she can stand against the wall under the window she tries to reach up for the blinds. Today she reached them; it is just the bottom part of the wooden blind so totally safe. Well I guess in her mind they were “sitting” on the window sill and like other things (the drum sticks on Rockband, the remotes on the side table) Once she reaches them it is a simple effort to slide or push them down to the floor, at which time she will sit and play with her new “toy” well she doesn’t get that the blinds are attached, so they kept pushing them off the sill and pulling them away from the window and they weren’t coming down and it was no easier to reach them and she couldn’t put them in her mouth this made her very frustrated and she proceeded to shout and fuss at them.

Well, what is a mom to do? Let her fuss until she gives up and goes onto something else? How long is enough fussing, she is a very determined little girl and doesn’t give up easily, how much fussing does it take before she gets really upset and is throwing a tantrum. Well while she was standing pulling the blinds she did it maybe 15 times, fussing, but not “upset” so I just kept letting her do it. Then she got mad, sat down starting to hit the floor and cry, so I went over to her and she immediately was happy again. I opened the blinds and let her look out and touch them, from my arms and it seemed to appease her and she hasn’t tried again yet today, but did I swoop in to the rescue too soon? I guess these are things I will learn in time, but I hate seeing her “unhappy” but I am reminded that this is the time when she developmentally NEEDS to learn that she can’t always get what she wants, and things will be frustrating. I am told this will happen with Walking, where her gross motor skills won’t be on par with her cognitive skills that want to walk, so this can cause frustration.

Some of the other exciting new developments is her improved dexterity with her stacker. She used to simply dump it out and chew on the base or wooden donuts, but now she can lift each disk off the base one at a time. She even makes a game of it, I will point to it and she will lift another and then another. She is so proud to be able to take them all off one at a time, but isn’t interested in putting them back on yet. She also I think is learning that if you push the Orange Button Mr. Panda will pop up. At first she did it by accident when crawling over the toy, which I guess in many ways, is how babies learn everything, but then the other day she stopped closed the Panda and then pushed the button again, close, open, close a few times. So I think she is starting to get it. A few times since she had opened the panda, but hasn’t learned about the other switches yet.

The other game we are playing, which I realize she is way too young for is the matching game. We have this cool book with Red Apple, Orange Fish, Yellow Sun, Green Turtle, and Blue Bird. The colors are also listed in Spanish. On the left is a space where you can place a cardboard cut out of the creature that matches the larger picture of the creature on the other side. She loves flipping through the pages of this book back and forth. Sometimes I say the color of the page, sometimes the creature, sometimes I say it in Spanish. Well yesterday I decided to take all 5 “blocks” out of the book place them in front of her and turn the pages one by one pointing to the creature and asking her if she can pick up the one that matches.

She did it right 2 out of 5 times, but I think it was luck, and she just put them in her mouth and tasted them, but I would say, nope, this orange Fish doesn’t look like the Red Apple, and then I would pick up the Red Apple and Show her how the little Red apple she was holding looked like the big one on the page. She had fun. I completely don’t expect her to get this at all for now, but I figured it doesn’t hurt to play the game with her. I also like it because I am trying to teach her pointing, which is something she would normally begin to learn about this time. So I point to the pop up animals and to other various things when we play.

Also, I forgot to mention… She is actually bouncing in her bouncer now. This is very exciting, as it is important that she bounces if she wants to learn good balance for walking. She really jumps up and down and gets all excited, it is very cute to see her do it. It is funny, when she is ready to get out she fusses and whines so then I go and get her, maybe after ten minutes this will happen, but she is so excited that I listened and come that she jumps up and down while I am trying to take her out. Very cute.

We haven’t done much with the two walkers she has. The few times I have tried recently she just sat down to a crawl and climbed on them, I don’t think she sees them as stable enough to walk around or quite understands push yet, but then again, I am in no rush to get her walking. I am convinced that if I was making any effort on my part like, walking her around the room holding her hands ect. That she would be walking already, just based on her cruising, but Sally informed us that its not good to teach a baby to walk too early, especially when they have High Tone Issues, so we are letting her completely come to it at her own pace and lead the way.

So sweet, I love that she falls asleep in my lap after a bottle it is the most precious thing and I know I will miss this when she grows out of it. It is hard not to simply let myself enjoy her and watch her sleep for the whole hour or more, but alas this is my time to get stuff done like bills and blogging, so 15 minutes of Indulgence and then she was transferred to her little nest. Sometimes I just have to squeeze her I love her so much. She doesn’t quite get cuddles yet, she lets you do It sometimes for just a minute but I am looking forward to when she is older and like to be cuddled and understands the concept of sitting still, like if we were going to watch a movie or something. But then again, if she is anything like me, which she is, she probably won’t sit still.

Ohh two more things..

I called a Pediatric Dentist and asked about the teeth thing. He said it is a phase and if she gnaws on wood or metal for a few months it is ok, but if she is still scraping her teeth on metal in 6 months it could start doing some Damage. He said the key is to make sure there is no decay, as that weakens the tooth and makes it easier to damage it. As with the pulling, he said babies don’t know their own strength, it is possible she could damage her tooth, like the old shoelace and door slam to pull a tooth out, but in reality it is very unlikely she will hurt them just pulling a cord or lip of a toy over them at this point. He said in 6 months if she is still doing it, take her in to get checked. Right now she is not on Joel’s Dental insurance, but during open enrollment I think in like April, I will add her so she can get an official check up. Though I suppose I should see how much one visit costs versus 1 year of premiums, paying out of pocket might be cheaper for now.

Foot tapping.. Apparently she gets this from mommy who unconsciously taps her leg/foot all the time, I hear even her Oma does this. So the other day she was playing over by the mirror and the activity gate and I was flipping through a magazine tapping my foot, I look up at her and smile so she knows I am paying attention, as she often turns and checks that I am still here, and then she decided to crawl all the way over to me.. No pauses or breaks, all the way across the living room, when she gets to the edge of the carpet she sits and begins to tap her foot/leg against the hard wood floors in unison with me. I just had to pick her up and squeeze her I was so amazed, and she was pretty amused with herself too!