Fly Away with Me

Fly Away with Me
Originally uploaded by vczdavis

Day 8, Friday 7/25

Holly had a great day so far. This morning she played quietly, sang songs, and took a nap with Mommy. When she woke she was very energetic and smiley She was holding her bottle more and bearing weight on her legs. In her nest she was sitting and playing with her star and Galaxy toy, and I placed them on her left side and she was picking them up from that side, but doesn't extend that side as much. We also did some stretches this morning.

We went to swimming in the afternoon, and she did very well today. For some reason when I leaned back to dip my hair into the water, and then lifted back up to look at her she would laugh, perhaps it was like a peek a boo, but I would do it over and over and each time it made her laugh. She was very kicky in the pool, she was very chewey as well, and looked at other babies. we splashed and went under water twice, and jumped several times. at the end when the floating toys come out she reached for them, and grabbed a lobster with both of her hands and chewed on its claw. Paige, our playdate was two and she would hand holly little fish toys which she would reach for and take. She was mostly quiet today, until the end, but she was much more smiley then usual, she is typically very thoughtful when at the pool, and today she looked very comfortable in her environment.

She was chewing on her toes with mommies help and grabbing them and pulling them to her mouth on her own. This week her granny is visiting, so she was up late going to the airport. She ate at 9:30 and had a 25 dose of Minocycline mixed in 3ml of Apple Juice at 11:00 PM. She didn't like this as much as the night before, as she was more awake and had to actively drink it, so was riled up from seeing her granny, who has not seen her since she was a week old. She didn't want to go to sleep. I tried putting her into the crib awake with sleepy eyes, but she kept fussing and fighting it off, so after about 20 minutes I had to get her. She did eventually fall asleep in her swing.

Octopus Friend

Octopus Friend
Originally uploaded by vczdavis

Here are some notes from the week below from Dad:

JOEL NOTES


7/18/2008
Holly was very playful today at lunch. She's squawking alot, much louder and longer sounds than previously. She does this when she's happy or upset. Vicki said that one of the other people at her swim class called these "Pteradactyl Sounds" and that's a good description. Today at lunch she was on her blanket, and there was a big toy next to her with lots of moving parts, she would roll onto her left side to watch it, then roll back onto her back to look at me. She did this over and over, it was very endearing. She could roll onto her side and back already, i.e. if following a toy, but this was the first time she seemed really purposeful about it, and did it without our encouragement and leading.

This is all before we started the minocyclin, we didn't give her the first dose until tonight just before bedtime. She didn't seem to mind the taste, but she didn't like it either. I think she thought it was some kind of extra drool.

(Here's a picture of "ocean time"-- we both mention that a lot in our notes). She likes grabbing at the dangling toys and kicking the supports to shake everything.

7/19/2008
Holly slept soundly through the night. She woke at 5:45 am for a bottle and then went right back to sleep. This morning she had a very runny poopy diaper. She was very interested in Ocean time, concentrating on the dangling toys. By the afternoon she was pretty cranky and did not nap much and didn't go to sleep until around 10:30, which is later than usual. We gave her the minocyclin around 6:30 pm. Her eye contact was like usual, a few times she make really strong contact for a long time (like 30-45 seconds), but often she would make eye contact and then get distracted.

7/21/2008
She's still doing great, no signs of any problems from the drug. Her poop is back to normal, and she' playful and alert. She's sometimes cranky but no worse than before. I'm not sure, but it seems to me that she's concentrating more in her play. She'll focus on a toy intentnly for a while. Same thing with her hand, she's always noticed and played with them, but now her attention span seems increased. Good eye contact too (sometimes). She's still making squaking noises, too, they are getting very loud and prolonged now. Sometimes she will squawk instead of crying to get our attention. She's still got the "high tone" and likes to bunch up her shoulders and arms.

7/24/2008
Thank god for apple juice. We were having trouble giving her the medicine, last night she ate most of a dose while asleep but then when she woke up when she was almost done, didn't like it, and spit up. Tonight (at dr jones's advice) we mixed the dose with 1/2 tsp of apple juice and she happily ate the whole thing, not even asleep. She's been noticing and grabbing her feet, and she seems like she's getting a bit better at amusing herself. Tonight she wanted to sit in my lap, but I didn't have to keep her attention, she happily played with her toy for twenty minutes before she needed my attention. When she wakes up, too, she makes noises to get our attention, but will contently wiggle or watch her mobile. She hasn't been very "talkative" yesterday or today with me, but im not sure how she's been during the day with vicki.

Also, I've noticed over the last week that she's been grabbing things with an open hand more often, as if feeling the texture. She does this with her toys, with the chair, and with my face and cheeks and chin. She seems to really enjoy this.

Rose Colored Hats

Rose Colored Hats
Originally uploaded by vczdavis

Day 7 Thursday 7/24

This morning Holly was in a very quiet mood, she played in bed with me and fell asleep. We went to my mother's group at 12:30 and she was very curious and active. She had some tummy time, and was holding and chewing on toys, she was smiling at the coordinator. She was tight, and I was trying to do stretches with her, get her to raise her hands above her head or extend her left arm. She would hold things on the left if I gave them to her, but she was not reaching out on her own from the left.

We drove into the city to run errands and took a walk. She was very intrigued with the new surroundings and sounds. It was very windy and she liked this. She has really enjoyed playing with her star cloth and chews on it a lot, and it seems to comfort and entertain her. We had a play date schedule for the late afternoon that was cancelled, and while driving there she was beginning to fall asleep, but when I received the vm and turned around to go home I got stuck in Downtown rush hour traffic. It took me almost 30 minutes to go two blocks and during this time there was no where to stop, pull over, or turn off the road. Because we weren't "driving" she didn't fall all the way asleep. She began to cry and became very frantic. I tried to give her toys to calm her, her pacifier, hold her hand, play music and sing to her but nothing worked, she wanted to be picked up and held, which driving on my own and no where to get out I could not do. She cried so much she began to choke and spit up some of her last meal which had been 45 minutes earlier. She was inconsolable, and hysterical, and it was torment. I never let her cry for more then 30 seconds. She finally cried herself to sleep and was whimpering in her sleep. By the time I was able to pull over she was sleeping, so I crossed the bridge and went home.

When I went to get her out of the car I had my sun glasses on, she woke when I parked and opened her door, at first she gave me and angry look, then I lifted my sunglasses so she could see me, and she gave me the biggest smile ever, I was so relieved. That evening, I cleaned her up, we had some naked baby play time, and she got a massage which seemed to relax her some, she didn't want to be put down most of the evening. We read two stories and sang songs. By the time she was ready for another nap, she let me put her in the swing. It hasn't had batteries for a few weeks, and I think she missed it. She was very content to be rocked and listen to the cricket noises, she watched me while swinging for maybe 10 minutes, I left the room once, and she began to fuss, and as soon as I can back and sat on the couch she calmed herself. She took a long nap and didn't wake until late.

She was off her usual schedule, but I let her sleep because she had a frantic day. When she woke at around 10:00 she played with daddy for a bit, she sat in his lap and played quietly with her star, she was hungry so we fed her a bottle, and she played some more, for maybe 20 or more minutes. I then started to get her ready to sleep. We played the alphabet sound game, read goodnight moon, and sang the Holly has a little fish song, that I sing her every night. We swaddled her, and at 11:30 gave her 25 dose of minocycline mixed with 2ml of apple juice. She drank this right down and didn't even notice the medicine. The Consultant from the Alta bates new parent group recommended the apple juice and said since it was such a small amount, and for medication that it would be ok.

Today wasn't the best day. She spent a lot of time bearing weight on her legs, with me holding her hands, and she spent a lot of time running errands with me in her car seat. We went to walgrees also, and were stuck waiting for a perscription. She did however seem to like all the walking around and spent time looking at all the new things, so it was a change of pace to our usual days.

Tomorrow her Granny will be visiting from Florida for a week, and we have swim class. she has been sleeping now for about 2 hours since the minocycline, and I suspect she will sleepthrough the night. I will email this, and begin on week 2 tomorrow.

I'm a Big Girl Now

I'm a Big Girl Now
Originally uploaded by vczdavis

Day 6 Wednesday 7/23

This morning Joel had to leave early, and holly went down for her nap at 9:20, she slept till about 11:00, Mommy was still tired, and so she gave Holly some toys, and she amazingly played quietly all on her own for almost a 1/2 hour. Holly does not usually do this. At that point she had to be changed, Poopie Diaper (she did not have one yesterday) and then we played some more, this time with Ocean Time. She was very intense and let mommy nap some more while playing with her octopus Friend. When mommy left the room the answer the phone she got upset, but as long as I was there, even if I was napping she was happy.

I fed her and tried to get her to take a short nap before her PT appointment, but she did not want to sleep, she had some more active quiet time, she laid on her tummy, but still would not push herself over. At 1:00 she met with Sally her PT and was very cheerful, but only for about 30 minutes at which time she got tired, since she had been up almost 3 hours at this point. She did a lot of stretches, held her full weight on her legs and her legs were not stiff, noticed and played with her feet and grasped and held a pretty heavy toy. I mentioned that her OT thinks her left side is tighter, and she was actually crossing mid line on Monday to reach with her right hand for a toy on her left side, so the PT put a toy on her left and then covered her right field of vision. She would reach with her right hand out, but couldn't see where to reach and this made her very frustrated, she tried to turn her head to look with the right and reach with the right to get the toy, and would not reach with the left. We plan to keep an eye on this, and try and get her to reach more with her left side.

In the late afternoon she was definitely teething again and was very chompy, today she was eating her terry cloth blanket with my finger inside, I would move my finger all around her moth and she would bit it in front, and on the sides, and she had a lot of oral motor stimulation. She also played with and chewed on her star, and I had not seen her chew it so actively before, she actually seemed to turn it from one corner to another to get a different texture, one is like a satin, and another is very rubbery, she seemed to like both.

Holly finally napped, and in the afternoon had more tummy time, and read two stories. She had a short massage, on her chest and arms mostly. We also played the upside down baby game which she loved and made her laugh. i would sit her on my chest facing me, and then let her fall all the way back so her head was down between my legs, then i would say upside down baby, I would then pull her up and say right side up baby, when i said this and she saw me and was upright she would smile and laugh and then push back to do it again. We did this maybe 15-20 times, she thought it was a very fun game.

We played with the baby in the mirror and practiced our ABC sounds and played with her feet some more. In the late afternoon she was pretty fussy, and was not taking as many naps and not for as long as usual, so I think she was tired. We fed her at 8:15 and went out to eat, she almost fell asleep in the car, but not quite, and was awake and alert and watchful at the restaurant. On the way home around 10:00 she fell asleep in the car. I gave her 25 of the Minocycline about 10:15 in 2ml of water, she took almost the entire thing, over 15 minutes but right at the end woke up and did not like the taste, I thinks he was startled that she was drinking something and she started to cough, and spit up most of it, mixed with her last meal. We debated on whether or not to give her another dose, Joel felt like she must have gotten some, and some was absorbed and mixed in her stomach and suggested maybe giving her only 1/2 dose, but i didn't want to risk another 15 minutes of sipping yucky tasting water, when she was already very upset and crying, so decided not to give her more. So I am unsure how much she got.

I still haven't heard from Dr. Jones with tips on giving her, her meds, but administration of the medication is very stressful and frustrating, because she can't take it with milk which is the only think she eats or drinks, and it tastes nasty. Tonight I forgot to add some sugar, which is likely when she spit it up once she woke up and tasted it. I will not forget tomorrow.

I totally forgot, speaking of Holly entertaining herself, this afternoon I put her in the bouncer, and put some books under it, as she doesn't reach the floor yet, and made myself some lunch, she sat there content for perhaps close to 30 minutes. I heard her reach and spin one of the toys, and she was facing the hall when I put her in and turned about 180 degrees and was facing the AC when I checked on her later. She was pretty shy at first and didn't really jump and bounce a lot, but I think if I keep putting her into it, she will play some more, she certainly looked around a lot and was curious about this new place to play. Also earlier this week I put her in her red seat to play, but she did not like it for long, she did grasp the toy on both sides at once and try to bring it to her mouth, since its attached and doesn't do that, I think she got frustrated, so next time, I will put the plain try and a different toy sitting on it, that she can pick up and put down.

Catching some zzz's

Catching some zzz's
Originally uploaded by vczdavis

Day 5 Tuesday 7/22

This morning Holly took a very short nap, and was very happy and social afterwards. We walked around the house, played with the baby in the mirror, had naked baby / tummy time and had a massage. One of mommies favorite songs came on the ipod and she danced and sang with holly, holly thought this was hilarious and laughed excitedly.

Today we had a play date with Miriam and Issac. Issac was 10 weeks and Miriam in about 18 months. She was very curious and looked around and watched the other babies a lot. She stayed on her tummy for about 5 minutes with no fussing, but she has not pushed herself off or turned off of her tummy for the last few days. She smiled when Miriam put her Lutchka into her mouth, and would reach for toys. Miriam would hand her a toy and she would take it. Some times they needed help with this, as Miriam was not the best at handing her the toys and often was trying to give them to her where it was difficult to grip, but with her Galaxy toy it worked really well. She also liked holding Miriam's hand.

later that night she was very intent on looking at her feet and with mommies help she put each of her big toes into her mouth. If I helped her hold her butt up so her feet were in view, or cradled her in an easy position she would reach and grab her feet on her own. She would try and pull them to her mouth, as she pulls everything to her mouth these days, but her hands would slip off, so with a little more help from mommy holding her butt up her foot could reach her mouth, so she held it again and licked her toes. She plays with her tongue a lot and sticks it out and licks things.. I need to try to do some more imitation games, I haven't done that enough, and it is a 4 month skill so I will report back on how she does.

It seems like she has been focusing on things more the last few days. Also she was very talkative at her play date. Miriam was very shy the first 2 hours, and holly was squealing and squawking away. I also saw Issac laying on his belly, he was very relaxed, and had his head turned, so his chest was flat against the floor. I tried to get holly into the same position, and she was way too tight, if she is not leaning up on her arms, she can not turn her head, or won't I tried to turn it, and she fought it, so I didn't push it. i wanted to try and get her shoulder's back and her head to the side so she could lay there like Issac, but she was too tight, so I will continue working on stretching her out. Also tonight was had some upside down baby time which she does seem to like, while upside down I stretch her arms back, she laughed again and I paid attention to what she was doing, and she was not pulling her shoulder's forward, so I do not think it tickles, I think it just feels really good to stretch like that, and she responds to it.

Holly had a 4 oz bottle of Formula that she finished at 8:15 and fell asleep. At 9:30 I mixed a half capsule (25mg) of Minocycline with 2ml of water, and put it into the medicine bottle. We took out her pacifier, and snuck in the medicine bottle instead. she wasn't really "eating" so it slowly dripped into her mouth as she sucked. It took about 10 minutes for her to get all of it, but she never woke up and she drank the whole thing without spitting up. I did put a pinch of sugar in also. I left Mary Jones a VM about other techniques and have not head back yet.

Its a Horsey, Giraffe

Its a Horsey, Giraffe
Originally uploaded by vczdavis

Day 3 Sunday 7/20

Holly has been pretty fussy today again, but I don't think it can be the minocycline already. Mom slept in today. This afternoon I read Holly two stories, she was very attentive for the first one, and also paid attention during the second one but began to get antsy. She played in Ocean time, and played on her mat. She ate 80 cc of Formula at 6:00 and was very very tired. We kept her awake until 7:00 playing music, singing songs, and daddy told her another two stories. She took another 12.5 dose of minocycline mixed with 2.5 ml of water. at 7:00. She was overly tired and this point and did not want to go to sleep. When playing with dad today she was somber, and concentrating. She grabbed the tongue of her Caterpillar friend, and was looking at and grabbing her feet a lot. She was not as smiley as she normally is, but did turn to my voice, and smile a few times today. She watched me work as she fell asleep and gazed into my eyes when I looked at her. When I turned away she seemed to be upset. Today she did not seem to be teething.

So go figure, what do I know... Around 7:30 I take Holly to try and get her down for a nap and she is ever so playful. We play peek a boo, and she grins and laughs, she tries to crawl over my shoulder and is very talkative, with her squawking, she is not at all tired but she is very chompy as she decides to chew on my finger, and as she chomps them, she finds this to be very amusing and is grinning and giggling with my knuckle firmly secured in her mouth. It was hilarious. Around 8:30 I fed her some more, as she was getting hungry by then, and she went to bed around 9:00. She was a lot of fun however and seemed to be much more like herself and very cute and playful. I think she just missed momma, as I was busy all day doing paperwork and spent little time with her she played with Daddy most of the day.

Day 4 Monday 7/21

Today was a good day. Katie Holly's OT came at 3:00 and we gave holly some chewy tubes to play with. She was extending her elbows and reaching for Katie's hair, the chewy tube, and other toys, particularly a yellow musical sun. She did many stretches, and was trying to push back when sitting, so we practiced relaxing forward and reaching forward. We did arm stretches above her head and too the side, Katie noted she seemed tighter in the left, and has a tendency to chew that hand more, in a fist. So I will keep an eye on this. Prior to Katie coming we did a leg and chest massage and had singing games. We also did some tummy time, 3-4 times and holly rolled over after looking for a few moments at a toy. She did a little more tummy time with Katie, but worked more on the sitting and stretching, and reaching and holding and grasping. Holly really likes the chewy tube and munched it a lot. She also played peek a boo with Katie and giggled. I have also observed at times when I massage and stretch her chest muscles she laughs, so I will look to see if this is because It feels good, or because It tickles. Katie says if she is bringing herself in, like a baby crunches then it is probably tickling.

I have noticed that Holly has been a little bit more "whiny" then usual and fussy, but not enough so that I am worried yet. According to Joel she was very playful in the morning, and she took a long nap with momma as usual from 10-12. She also had a very good poopie diaper this morning, that was not watery as it had been. Although she didn't have one yesterday.

Holly had BM at 6:45 and the minocycline at 8:00 ish. I broke it into 3rds this time (new pill) so the dose was about 17. However the first dose I mixed in one of those medicine bottles and put 1.5 of water in it, the dropper amount I was using was equivalent to .5 It worked good at first, she sucked some of it, maybe a 3rd down but I guess it taste bad and she spit the whole thing up including some stomach contents. So I dumped that batch thinking it must be too much water, and mixed a 2nd 3rd in the dropper again in 2ml of water. She mostly drank it, but still spit some up, I put a pinch of sugar in in hopes that it would make it taste a little better. I am worried she may not be getting barely any at all, since we can't mix it with her formula or breast milk, she has to drink it strait and it tastes bad. She is too little for juice or something like that. I am going to call Mary Jones tomorrow and see if she has any suggestions on administration. It is 9:00 now, she seems a little hungry but she is also very tired, so if she falls asleep it would be better, less proximity for the milk.

Tonight she is very interested in faces, she is grabbing my nose and feeling my mouth and cheeks. She played in ocean time and was very active She is grabbing the toys and bringing them to her mouth, she kicks and shakes the whole thing. We took a short video of this. She is turning side to side and reaching. We also did some more tummy time.

Hmph

Hmph
Originally uploaded by vczdavis

Day 1, Friday 7/18

Prior to the administration of Minocycline, holly attended swim class. In class she absorbed her surroundings, watched other babies, dunked under the water once, kicked momma with her feet, when talking with another baby who put his fingers in its mouth she after a moment did the same, and continued to chew her fingers. At the end of class she was squawking. She ate at 7:00 and we gave her a 12.5 dose of minocycline mixed with a full dropper at 8:00. We administered it fast and she immediately spit the whole thing out. Assuming none was absorbed we gave her a second 12.5 dose mixed with half a dropper. Joel administered this slowly and she swallowed most of it. She went to bed at 8:15. While she usually goes down between 8-10, it was a little earlier then usual, since her 7pm meal was only 60cc of BM. She did not wake until 2ish, where she was very playful and ate another small meal of 70cc of BM. Mommy sang her back to sleep and she awoke again around 6am where she had a large 100cc bottle of bm. On Friday she did not have a poopie Diaper, at 9:30 am on Saturday she did, there was a hard ball but it was mostly watery according to daddy who changed it. Topically Holly will have only 1 poopie diaper a day, over the last few days she has seems a little constipated with a consistency thicker then peanut butter a few days ago, she will on occasion only go every 2 days. I will watch this as minocycline can cause diarrehea. This afternoon she played with Ocean time for about 8 minutes before calling for mommy. She actively reached and grabbed the octopus and the sun, she turned to her left looking at the whale and music toy, she kicked as usual.

She was a little fussy this afternoon, and had a bit of a diaper rash, she was definitely teething again as she was very chompy.

Day 2 Saturday 7/19

Holly ate at 4:15-4:30 and we administered the minocycline at around 5:30 . This was again a 12.5 dose mixed with 1/2 a dropper (2.5 ml) She ate again at 6:45. Formula prior and after. She was rather quiet most of the night, she was smiley at times, but just wanted to be held and not very playful. She did play in ocean time again around 7:30 for another 10 minutes she was grabbing the whale and doing baby crunches trying to pull herself up even using the toys to do so. This afternoon she very much did not like tummy time, she didn't even turn herself off of it as she does typically she became quickly frustrated and cried. I put her on her tummy on the quilt in the living room and again in her crib during naked baby time. She had a brief massage around 2:30. She went to bed easily around 9:00. she was not fully asleep when I put her down but she laid quietly in her crib. She cried once at her dropped pacifier, but then fell back asleep once I gave it back to her. We plan on continuing to give her the dose right before bed, as this is the easiest time to have a large gap between feedings.

Hanging out on the chair

Hanging out on the chair
Originally uploaded by vczdavis

This is Holly's Second Visit to the Mind institute. New research has indicated that a drug called minocycline may have a positive effect on Fragile X. Dr. Hagerman proposed a 1 month trial with Holly.

Basically Holly had a clinical visit, then met with the baby Research team, for several eye tracking tests. She also performed the Mullins and Vineland Assessments to give us a baseline of development. Holly would then take the medication for 4 weeks and repeate the tests.

In the Fragile X Knockout Mice, the positive effects were seen over 8 months later. Side effects could include a graying of her teeth, but it was likely that her adult teeth would not begin to calcify until Holly was 6 months old, so this was the perfect window of opportunity.

Holly would be the first Fragile X baby to try this treatment.

As part of the study, Mom was asked to keep a daily journal, which I will be posting here. I have enjoyed writing these so much, I will continue to do so.

Cool Tech

Cool Tech
Originally uploaded by vczdavis

Some general notes, we have noticed that holly is much more articulate and intentional. At the start she would hold something if I handed it to her, now she reaches, picks it up, passes from one hand to the other, turns toys brings them to her mouth. She can right her pacifier when she grabs it from the side. She also has fed herself. First she would notice when we were making her bottle, now she tries to grab it while we are making it, and as soon as it is done, she takes it with two hands and puts it into her mouth. She doesn't quite know she is supposed to keep it tilted up, but she holds it and puts it into her mouth. She has made a lot of progress.

She is babbling to herself. I laid her down in the crib and she was just cooing and talking and chewing on her feet. Which she can get completely into her mouth now, and is always holding or chewing on them. This past week she had to deal with a lot, being in the hotel, not having her swing, and the extra stimuli from the conference. She handled it like a champ, smiling, social, happy, a little miss popular. Sorry my notes weren't better, but being out of town without internet access made it difficult to stay on top of all the details.

New Earrings

New Earrings
Originally uploaded by vczdavis

At 17 weeks old, Holly had her ears peirced. She did cry, but only for a monent. The next day she had to get her 4 month Vaccinations, and this was a nightmare, she cried almost an hour, and then intermittenly for the next three days was crying and fussy and angry. Her ears have healed wonderfully.