Random Thoughts Thursday

So things are up in the air with Holly's services still. It is all very infuriating.I got a call today from my caseworker that the second hour of speech therapy was denied upon appeal.Furthermore she informed me that I am now required to get a denial letter for OT, PT, and Speech from my insurance company.While PT is approved until September, Speech is only until June and OT is temporarily approved only till July.I went back and forth with my case worker about how unreasonable this was, and that I already sent the information they needed.She said it was too vague and not detailed enough and i needed an official letter from them, it is such a pain.I hardly have time to make it to the bank or post office yet I have to now make all of these phone calls and do all this paperwork.And the worst case, if it does get approved then Holly has to get three new therapists in a new location.Anyway it is all very frustrating and annoying, but there isn't much I can do but jump though the hoops for now.So here Holly is playing ball with her Granny when she visited for her Birthday.We learned that when Holly is bouncing on the big ball she is really good at catching the ball.She is getting really good at cooperative play these days and besides tossing the ball back and forth,She is even rolling the ball as well, which is really good to rotate her arms.These are some pictures of our Cherry Blossoms, it is only may but they are gone already from the tree, it is just green now.I wonder if they will come back again later this summer or if the tree only blooms once in the fall.It was a lot of fun to take these pictures with the new camera, the camera is amazing.Holly has been getting a lot of drawing in these days, she likes to color and also make requests for us to draw pictures too.Here she is stealing Tanta Kat's seat. It is a chair Kat brings in for TV night when we all get together to watch lost.She loves sitting here and pretending she is a big girl and also taking Mommy's drink.I think she is currently going through a bit of a developmental spurt, or it could be the increase dose of Sertraline.Maybe it is because we started her back up on the High dose of Folic Acid, which we realized we stopped right when her speech regressed.

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!"

Doctors and More

So on Wednesday after our session with Sally we decided to get Holly’s X-rays done. I wanted to have them to bring to Dr. Hagerman’s office, but I hadn’t been able to go earlier because there was an issue with the Insurance Authorization. When I arrived it was a nightmare, we spend over 30 minutes in the parking lot looking for a spot, at one point I left the lot and came back in, because the first 20 minutes are free and I wanted to reset my time. I was worried we wouldn’t make it because Radiology closed at 4:00 to walk in patients. At first we had to go to registration which was different then when we had the ultrasound done. We spend a lot of time in the waiting room there. And when we finally went to registration there was an issue with the insurance because they had two Holly’s listed in our plan, one male, one female, and with the birthday of 01/02/2002. I was able to get it all worked out and they sent us up to Diagnostic Imaging.

When I got there we hit Hurdle number two. Hey didn’t have the referral from Holly’s pediatrician on file. How something like this happens I am not sure, since it was faxed twice, the first time over 6 weeks ago, and then the second time the previous Friday. Thankfully they were able to call her and she faxed it yet a third time. This of course meant more time in the waiting room, but since we were in the queue it was ok that 4:00 PM came and went. Holly was very active and didn’t want to stay in her stroller. Since she would have to stay still for the X-Ray I decided to let her run around the waiting room. Since it was a children’s hospital, it was pretty kid friendly. There was a book case with children’s stories that she preceded to remove one by one, and a large fish tank. She cruised back and forth along several rows of chairs, and when other kids came in to wait she crawled over to say hi.

After a while she got bored with the waiting room and headed out to the hall and tried to escape. The staff thought she was adorable and quite amusing, so I let her wander off down the hall for a while, until she got into something precarious, like trying to sit in front of a door or something and then I would bring her back to the waiting room and reset. There was this one little boy who was a few months younger then Holly but he was like 4 inches taller, huge in comparison, and he was very friendly, in fact he followed her around, he wanted to touch her face and pet her hair, and now I am remembering this is actually where she got her hair pulled. His mom was horrified, but I told her it was ok, and that Holly is normally the one scratching faces and pulling hair, so I know how she feels, and she is tough, and can take it. I picked her up and comforted her and then she was ready to play again, with the little boy even.

Finally they called us back, and I changed Holly’s Diaper so she would be more comfortable and the technician got everything ready. Originally I was told that I would wear a vest and could stand next to her but he would not let me. So I had to stand about 10 feet away behind a screen where the other technician was. It was in the same room, and very close by. So the X-Ray consisted of 4-5 shots. She simply had to lie down on the table and all was well. It was a little cold and since the films were under her she couldn’t lie on a blanket and had to have her top off. She was fine for the first two shots, but then she got a little wiggly and tried to pull her legs up, he pulled them back down, but then she tried to hold her ears, and he had to hold her arms down, so then she tried to do crunches and sit up, and he had to hold her forehead down. All this restraint made her very mad. The forth one had to be on her side and she couldn’t curl up so by that time she was crying. But this all took less than 2-5 minutes and I was quickly able to go to her and pick her up and as soon as she was able to sit up she stopped crying and was fine.

It was funny, I am sure the technician has done this 1000 times but between each shot he had to change the films and was not holding her and the table is rather narrow, so my worst fear was that she would flip over and fall right off. More than a few times I jumped forward to run to her aid as she began to wiggle when he wasn’t holding on to her, but then he would put his hand on her and she would settle and not actually turn and was fine. So once we were done there was a third waiting room we had to sit in while we waited to make sure the pictures came out good. They did not, and he had to do the last shot again. This time they decided to do it differently, in a way where Holly was to lay her head in a foam brace type thing and sit raised on a board. As soon as we went back into the room she got upset, realizing that I would be putting her down again. But it went quick. I held her while they set it up, and laid her down into the foam and though she didn’t like it, it only took about 60 seconds and we were done.


They noticed and made me take off Holly's Earrings during the second set of XRays. I have never done thins before, and actually needed to have the guy help me. I held Holly's head and had him take them off, I didn't have a strong enough grip or pull to get them to open. I stuck them in my pocket and when we got home cleaned her ears and the earring with the piercing solution and put them back in while she was taking her nap.

I was able to get a copy of the X-rays on a CD which is cool. It comes with this special X-ray viewer, and the pictures are not in a normal format. So when we got home I was able to look at them, not that I knew what I was looking for. One really cool thing was that we could see holly’s Molars, and boy it sure looks like they are ready t o start coming in. We really couldn’t tell what else we were looking at, but on Thursday our Pediatrician met us at UC Davis so she could meet Dr. Hagerman, and she said she spoke with the Radiologist, or X-ray Person, and they told her it all looked great, and Holly had no issues in her Neck, shoulder’s or spine. SO anything going on is definitely a tone issue and not related to any possible skeletal problems. I am looking forward to sharing the X-rays with Sally, I am sure she will find them interesting, and maybe even helpful.

UC Davis was a long day. We got up around 8:00 so we could leave around 9:00 to be there by 11:00. Thankfully Holly slept most of the way up there in the car, but that meant she was awake by 11:00 and would be ready for her afternoon nap sooner than usual. Dr. Hagerman was running late so it was almost 11:30 before we got in to see her. I didn’t mind much though because there were a lot of fun toys in the waiting room for Holly to play with and it was Dr. Jones first time really getting an opportunity to engage with her in a playful setting, and watch her go. She was amazed with her cruising and crawling and fine motor skills, and said that if we didn’t have a Diagnosis at birth she would have missed it, and not known Holly had a genetic condition, or noticed any significant delays that were cause for Alarm. But we talked about how it is so hard to know what Holly might have been like in that situation, because I truly believe she is doing as well as she is because of the early intervention services she is receiving, and I credit her therapist for her amazing progress. Well also her problem solving attitude, and determination.

Once we did get in to see Dr. Hagerman we met a Colleague of hers from the Fragile X Center in Chicago Affiliated with Rush University, and a Colleague from Korea. There was a 4th person Observing but I forget exactly where he was from, we met him last time we were there so he is doing an extended visit, unlike the Woman from Rush, who was just there for the Day. We talked about Holly’s Development and there were a few things I had questions about. I think I am being a paranoid, hypochondriac, over protective mother, but I somehow got it in my head that she might have a Mitral Heart Valve problem, which is somewhat common in Fragile X. I came to this fear because the Internet has too much information, and I was looking up sweating while sleeping in babies, trying to see if Holly’s profuse sweating was related to anything, or maybe had something to do with Self Regulation, and her fighting sleep. I found that sweating in your sleep could be a sign of a heart problem. I knew there were issues with Fragile X and the Mitral Valve so I looked it up, intending to rule it out. Then I read that it can cause breathing issue and rapid heart rates. Well just recently Holly has been gasping for air, catching her breath, when she is active. It is a little off putting, and while it is some days rare for her to do it at all other days she will gasp several times making her circuit across the room. I had chocked it up to having a stuffy nose and mouth breathing, and was keeping an eye on it. But once I read about breathing related to the Mitral Valve I worried.

Well, Dr. Hagerman, and Jones were very sympathetic and patient with me and both carefully listened to Holly’s heart and said that if there were any issues they would be able to hear it, and then follow up with an EKG, but this typically didn’t develop until someone was much older, and that her heart has always sounded amazingly strong. They reassured me her heart rate was normal, and I listened, and it seemed fast to me, but they said that is normal for a baby. Then later she did the gasping thing, and I jumped, “See, did you hear that?” and they had. They checked her out, but said that it was a common language development thing. She is playing with her breaths, learning how it works, and it isn’t very different then doing something like Raspberries. Her lung and breathing sounded fine otherwise and that I had nothing to worry about. I now know I was completely over reacting, but they said no, it is good to bring up concerns like that, because you never know when it could be something serious, and they were happy I was so observant and attentive, but that in this case she was actually fine.

We also discussed the Folic Acid therapy and I explained how I had not started it because of the way the pharmacy gave me vials for an IV with Syringes. She said that was crazy and that her Pharmacy made up a solution, and they could give me a 3 month supply and it was only like 20$ without even using insurance. So she wrote me a new prescription. She said if there was a compounding pharmacy locally, they could call her pharmacy for the formula when I needed the refill, but I should give it to Holly for at least 3 months. The solution is actually only good for 100 days, and needs to be kept away from light, so we plan on starting it today.


While we were there we let Holly crawl and cruise around the room, it is hard t contain her in one place especially in top of a table and while she was pulling up on the table leg, once up she let go and sat her self down. Joel said she stood for a few seconds. He pat me in the arm and asked if I had seen it, or if anyone had. I missed it, but the Specialist from Rush nodded her head, she had been impressed and saw it too.

We also discussed Holly’s Speech Therapy issues, and the value of having early speech therapy. She says her therapists start working with babies at 6 months old, and that in her report she will recommend that Holly receive Speech therapy two times a week. I am hoping her report goes a long way to get the regional center to approve services immediately. That said, she thought we were doing an amazing job working with her, and although she isn’t make as many sounds as she could be she was very vocal and seems to want to communicate which is half the battle. She looked in her ears and said they look fine but recommended we see an audiologist to test her hearings and do a more thorough exam to make sure there is no fluid, because ears problems are so prevalent with Fragile X kids, we want to be proactive about it. I had wanted to do this anyways, so Dr. Jones said she would do the referral in two weeks when we come in for our 1 year visit. Also she recommended doing an eye exam before she is 2. She is not currently on our vision insurance, so I need to find out if the regular insurance covers the exam, and just not the cost of glasses, which I am sure she won’t need, at least not now.

This was basically the Visit with Dr. Hagerman. It ran long, and our next appointment was at 1:00, so we only had 15 minutes for lunch, but Vivien the coordinator found us and told us we could take until 1:30, so we were happy to get the break. I was a little worried about Holly because she had been up since 10:45 and was starting to seem a little bit sleepy. We went down stairs after lunch and started the eye tracking experiments. We got through 3 videos before Holly was fussy and didn’t want to sit still anymore. We had actually brought our sandwiches downstairs so Holly could play a little before I was going to make her sit still, but she was ready to wiggle some more. So we changed her and let her play for a while and made her a bottle.

She basically whined through the next three videos but did make it through them. We took a break after number 4, because though she watched and paid attention she wined the whole time. So we took another break and worked on the Mullins. Before I describe that, I have something interesting to note. I thought Holly would do really good during the video’s because we watch a lot of Baby Einstein, but what I realized is that she likes to crawl all over me, and often watches over my shoulder, wiggling in my lap, sideways, ect. And for the testing she had to sit still in my lap and not flip, flop and wiggle. She didn’t much like that. But I never realized how much she did move around during out “quiet” time in comparison to being in a situation where she had to stay stilish (at least keep her eyes in the same place so they could be tracked.

When we did the Mullins test they had Holly sit on my lap so she would be at the table, and be able to do tasks at table height. We did stuff like showing holly a toy and covering it to see if she would look for it. She then had two covers and put the toy under on and not the other to see if she knew where it was. We tried a simple puzzle. She knew she was supposed to somehow put the piece “in” the puzzle and tried several times in several ways banging it on the puzzle to get it in, but didn’t. We also tried some nesting blocks, but in the way it was presented she didn’t do it. It is interesting because the Mullins is very specific, and you have to show three nesting items take them apart, put them in, take them apart and then Say, Holly you do? Or something to that affect. Then you can’t really help, point, or prompt her. What we do at home, is I point to the container and say, can you put it in, and then she will. But presented in a different way, and simply watching her do it and then be expected to do it herself, she wasn’t that interested and would rather chew the cup. In a similar way we did a matching test where there was a key and a triangle and then holly had the key, and she would say something like, show me which one is the same, Holly same? But she isn’t really that advanced yet either. I think we did some stacking which she isn’t doing, and then putting in and out. I think she passed that one. She had to take every item out of the container and then put every item back in. But about half way through putting them back in, she wanted to start taking them out again, so I don’t know how you score that. Then there were some gross motor skills which she is doing, except the independent walking, and they asked us about a few other things based on our observations.

All in all it went rather quickly, but she had a lot of fun sitting table height and doing the activities, so we are going to try that with her using the hanging on table chair, and try and teach her a few tricks.

After we went back and got through the last two videos, but Holly was very tired, since she had been up since 10:45 she was going on 5 hours, and she was doing very tiring tasks. We had to do a blood draw, because she still needs a final third test done, but they poked her twice and didn’t get a vein, so we said enough, let’s try it next time, and no blood was taken, but she sure wasn’t happy about it. They Had Baby Mozart, and put that on for her, and the prick hurt, I think if at that point they had found a vein and let the blood flow she would have just been whimpering, but they were looking for the vein, poking the needle around and pressing down trying to find it, so she was crying most of the time, but the whole thing was less than 10 minutes including breaks.

Afterwards we drove home. Holly slept in the car on the way back and that is pretty much our trip. They want us to come back in 6 months, and I will be scheduling that with Vivien.

Settling Back In

Monday started off as a slow day, I had a lot of unpacking to do, and it had not really sunk in that I was now unemployed. I was actually very productive, unpacking almost all of our stuff, and I had an appointment with Comcast to switch to cable modem and digital phone from DSL and Landline, also I called the insurance company to find out about the repairs, which was a challenge and took a bit of coaxing, and played phone tag with Holly’s therapists trying to schedule her 6 months assessment, it was a super busy day. In the afternoon I decided to give her some sweet potatoes, she loved these, in fact she liked them so much that she ate ¾ of the container, I didn’t want to over do it so I stopped her.

Holly was sort of happy to be home but also sort of not, the house was really quiet, she had been used to there being like several people around at every moment and getting constant attention. I played some music to keep the house noisy, but she was very clingy and cranky all day, and exhibited a little bit of stranger anxiety when Katie came. Katie had her report with her that I was able to review, it was a draft, and for the most part she has her assessed on the 5.5 month level, this was based on assessments she did about 3 weeks ago when she was 6 months old, almost 7, so she is coming up about 6 weeks delayed. I was happy with the report and the progress she has been making, she has several skills that are in the 8-10 month range, but the cluster of skills is around 5 months, she has a few only at the 3-4 month level too. Yet the main thing is that every day she learns something new, and I see her moving forward every day. Since Holly has been so fussy and she seemed to be at the edge of being sick, we decided to keep her in the co-sleeper most of the week, laying her in bed next to us, so we could keep a close eye on her.

On Tuesday we got a package from my friend Ona in England, she got Holly the cutest items, a pair of bear slippers, and some pink knitted shoes, and finally a pair of lacey socks and patent leather black shoes. The first two par are still too big on her, but the black shoes were just her size, and were a perfect match with her little school girl outfit pictured here, but they didn’t seem to stay on her feet for too long.

Tuesday was a low key day catching up on all of the housework and settling back in from vacation; it still has not sunk in that I don’t have to work anymore. I spent the afternoon going through a week’s worth of mail, doing some bills, and other paperwork that I had to get done. In the afternoon I fed Holly, and since she liked the Sweet Potatoes so much, I mixed them with some rice cereal to get her to eat that, she eat it up, though clever at trying to keep her mouth closed, she was happy to eat it and you could tell she liked the flavor.

On Wednesday morning I was off to get a cleaning at the dentist’s office early in the morning and to pick up a prescription from Children’s Hospital. It was for Liquid Folic Acid, this high foliate treatment is something that Dr. Hagerman recommends and writes about in her book. The dosage is really high compared to what people are used to giving, and it doesn’t come typically in a liquid for, you have to get it in IV vials for it to be liquid, so when I picked it up I had to also get 30 syringes, as you need to use a needle to get it out of the vial and then inject it into the milk, which needs to be at least 50cc’s. It is weird how you use the needles, you have to inject in the amount of air equal to the amount of liquid you are removing, and it’s weird. I filled the prescription but we haven’t started giving it to her yet. We plan to start this weekend, so we have some time to play with it, give her a small dose and work our way up.