Thursday, July 31, 2008
Today has been a good day so far. Holly woke up and played with her granny, the usual, oceantime, aquaduck, blocks on her daddy's chair, and they walked around the kitchen. She took a long nap in the morning and then we went to my mother's group. She was very active, climbing all over me, and playing with her toys, rattle and star, and very curious looking everywhere. She was a bit cranky when we came home, but I was able to relax her some with a massage, and then she gulped down a bottle. Then she got very fussy, and i think she is teething again. Nothing would sooth her, I would put a cold teether in her mouth and it would work a few seconds then she would do her whiney noise. Finally i forced her into a nap, by swaddling her and putting her into her swing. She fought it for about 30 seconds and realized she was tired and fell fast asleep.
This evening she has been playing, she is very curious and active. She is reaching more for toys, she will grab them, and then bring them to her mouth. She is also tasting objects, she will lightly lick it, then chomp down on it when it seems safe to chew. She is also putting things to her mouth, then taking them out, looking at them, and putting them back in.
She has been very sensitive to wet diapers the last few days, she has always told us when she is wet, but recently she has been very cranky the second she is wet. I wonder if it is at all related to sensory integration issues, as other babies seem to be able to take a wet diaper longer. Sometimes i will change her 4 times in two hours, for small little tinkles, but once she is changed she is happy again.
She also has begun peeing on Joel whenever he changes her, but she does not do this to me. I can take of her diaper, clean her off, do some massage, weight her, and give her naked baby time, and she never pees. With Joel, as soon as the diaper is off, she pees again, getting the table and her cloths sometimes dirty.
So Holly had a snack at 8:15 so we decided to give her her medicine at 9:30. It was 5ml Apple Juice 25 dose 2 pinches of sugar. I puckered her lips by squeezing her cheeks, and Joel kinda squirted it into the side of her cheek. She drank it down this way much faster then usual, with her continuous upsettedness, but I think she spit up much more then usual, so I think tomorrow I will try it when she is sleeping again.
She is super teething again this evening. She is lunging forward and chomping down on things like knuckles and fingers and gnawing at them. A family friend was over, who has 4 kids and played with her, said she is blowing raspberries, I think that's when she makes little bubbles with her drool. She is indeed doing that, but I had not thought it was intentional.
Also Holly is verbalizing a lot more, everyone says she is really talkative for her age and I am starting to hear more sounds she definitely made an ah goo sound and sometimes makes a ma sound. she still does the pterodactyl screech, but there are more tones and intonations in it, and she has a little sense of humor. Not only is she laughing when I sometimes rub her feet and chest, but she laughs now when I make funny faces, not all the time, but when they strike her as particularly out of the ordinary behavior.
I put her in her bouncer again today, during dinner. This time she only stayed about 10 minutes she wanted to be at the table with us, and eventually she was actually really tired and ready for her swing. But she is bouncing more. I have to do something with the books, as she is moving them, or they are sliding off each other since there are three stacked, as she bounces. But she did entertain herself for a bit. She is sleeping in her swing now. She is such a good sleeper.
This is a link to her picture of the day page:
I don't actually get one every day but almost, and some days I make up for it :-)
Wednesday, July 30, 2008
Today Holly played with her granny's in ocean time, had a story, sang some songs, tummy time with Aquaduck and then was ready for a nap. I didn't get her to sleep until 12:00 and she was supposed to have her PT at 12:45-1:00 Start, but I thought a little nap before was better then nothing. Then her PT Called and had to cancel because she was coming down with a bug. I let Holly sleep, and she stayed asleep until 4:15. It was a very deep sleep, and I think she was catching up from taking no naps the day before, also yesterday at chyhuli she had a lot of new information to process, and I think she was just tired from such an active and big day. She woke to a bottle and was thrilled to be well rested and fed.
She had a wonderful time playing in Daddy's chair. I sat her up leaning against the arm and put toys next to her. She would actually reach over to them and pick them up. She had several balls that we were playing with and i would put them in her lap between her legs. One is a hard rubber translucent ball with glitter inside that moves. It is very heavy, and with two hands she was able to pick it up, she tried to put it in her mouth but ended up just licking it. She played with her texture blocks, these are large soft cubes, with different textures on each side, and pictures, one has a mirror which she liked to look at.
We also have a soft bumpy ball that she picked up and with her hands she explored the bumps on the surface. Before I gave her the toys while she was sitting on the chair, she was exploring and feeling the seem on the chair, it is made of brown microfiber and she was looking at the different shades of brown patter from the light and texture and rubbing the surface of the chair, she did this for a few moments, and eventually went from sitting up to laying down, once she was in this position and stuck, she got fussy, so i sat her back up and gave her the toys. I had a pile next to her and she would reach for one and play with it, then eventually drop it. Some times I would hand her a new one and she would take it. It was very exciting.
I also need to cut her nails again, they grow so fast, but it seems that she has scratches on her ankles, so I haven;t seen her play independently with her feet much, but the scratches are evidence that she has been at least reaching them to scratch herself.
She was up for a while after her long nap, and had a fashion show for her grannys, today she wore 5 different outfits. She also had a bath and a very long massage. She was in a good mood for the massage, so she didn't get fussy at all, and I was able to go through my whole routine twice. Yesterday at the museum she had a very very watery poop. Today she has not gone yet., I am wondering if the apple juice is just now getting through her system, I hope she doesn't continue to be so watery, I will keep you posted.
Holly woke up from her nap and ate at 9:20, and played for an hour. She bumped her head and startled herself and cried. Daddy was comforting her and I was across the room smiling at her, so I stuck my tongue out at her and she smiled and stuck her tongue out me. It was very cute. At 10:30 she had 25 minocycline with 4ml apple juice. She took it better then usual, but still didn't like it. She sat in her little nest hugging her star for about 30 minutes and fell asleep.
Tuesday, July 29, 2008
Holly had a busy day today. We're getting better at giving her the medicine, and it's only taking about 10 minutes, especially if we wait until she's sleepy. She's still not happy about it but she drinks it. We had family in town so we took her out to the deYoung museum, and she really enjoyed it. There was a Dale Chihuli exhibit, giant blown glass sculptures with bright colorful lighting, and she loved it, she stared at the sculptures and reached out to try and grab them. Afterwards, we left at a friends house with Granny and their sister to babysit Holly and new baby and we all went out to see a movie. Holly was well behaved the whole time, but when we got back their dog barked when we arrived, and it startled her, and she was really upset. It took quite a while to calm her down, like twenty minutes, and it was the most upset we've ever seen her other than the afternoon after getting her vaccination shots. We think she might have been a little anxious being away from home and mommy for all afternoon, and then the dog barking just really startled her. She's still as playful as ever, and she has started sticking out her tongue... not mimicking me doing so, but she'll just leave her tongue sticking out for a few minutes. It's really cute.
Today we are going to the DeYoung Museum to see the Chyhuli Exhibit, and then she has an evening playdate with Lucian, while mommy and daddy go on date night, her granny's will be watching her.
In the morning we had some friends in town, and they all played with Holly, took turns holding and feeding her, and she sat at the table like a big girl and chatted with everyone. She was very social. She only took a short nap. She also played with her Aquaduck, got some more tummy time and read stories with her grannys.
She loved the Museum, she was wide awake and walked along in the Bjorn, and loved the glass and colors she kept reaching out and would have loved to hold the many items if she could have. We looked at some paintings and sculpture as well, and we were there for over two hours, and except for when she needed to be changed she spend the entire time mesmerized. The museum was very crowded and she was very popular, everyone wanted to say hello to her and she was very social.
We met up with some friends for dinner, and though she had a long day, she did not want to sleep, for a bit she played sitting on mommies lap, but then i put her in the carseat and handed her her star toy and she entertained herself for at least thirty minutes, it was very low key, but she was not sleeping.
At Lucian's house she had new toys to play with, one was a playmate with hanging animals, and when you pulled them they made noise and played music, she pulled it and startled herself but soon found this to be a fun game and continued to play with them.
She liked having different seats to sit and play in, and fell asleep in the swing.
She woke and was a little disoriented, and not very happy to be in an unfamiliar environment, and not see her mommy, but she was given a bottle and was ok. Then there dog started barking and this was something she never heard before, she was very startled, and basically freaked out. We had just gotten home, and she cried for at least 30 minutes before she would calm down to a whimper, and be soothed. I of course felt terrible, and hope that leaving her at day care is nothing like this.
When we got home I made up her medicine for her, it was 4ml Apple Juice, 25 Minocycline and two pinches of sugar, as she still does not like the taste. It ended up being around 1:00 Am before she drank this. Same as the night before, she would suck a sip, make a face, then I would give her the pacifier (Joel actually this time) then slip it in again, suck a bit or two, then taste it and realize she didn't like it, and make a face, ect.
Monday, July 28, 2008
This morning she played with Granny, and rocked in her swing. She did not want to take a nap, and woke after 5 minutes, so granny brought her to Mommy and after singing songs for about 20 minutes she took a nice nap, to rest for her Therapy. She woke and ate just in time to play with Katie. She was very focused on holding and playing with her tongue and didn't want to do much else. She did do several good arm stretches, bared weight on her legs, followed and grabbed for toys, and looked at her feet some, but not a lot. We have a new tummy time toy with is an "aqua duck" it fills with a thin layer of water that she can then press on and it squishes around moving the toys inside. She seemed to be very intrigued with this, and stayed on her tummy to look at it for a long time, and did some pushing with her hand with help. She however really loved activating her feet and using them to step and kick at the toys and feel the different type of ground / surface underneath. So she had a lot of fun with this. While feeding her a second bottle, Kattie was able to get her to relax some more and do some really good stretches and she was reaching up with her left hand well.
She walked around the backyard today, and read books, and sang songs. She is pretty tired from her session and a bit cranky and took two naps so far this afternoon. I am still in awe that she will recognize me from across the room, and watch my every move. When she woke up today she was grumpy and her daddy brought her into the living room, and as soon as she saw me over on the couch she had a big smile. Then later when playing with Katie, she kept looking over to make sure I was there, and when I walked into the kitchen she watched me go, and waited looking at the door for my return. I am slightly worried about leaving her in day care, as she has been missing her mommy when i don;t spend every minute with her. Today she was angry and was fussing, then as soon as i took her she cried and yelled. I told her to get it all out and tell me how upset she was, a few moments later she was happy and hugging my arm. I may be reading too much into things, but it felt like i was a safe person for her to express her emotions, and then she was comforted. Is she old enough for this type of complexity?
She had a very fun afternoon playing in ocean time, and playing upside down baby. She giggles whenever I do this and has a blast. She also played in her bouncer. She chews on the side of this and drools all over it, I will have to put something on it, or a bid on her until she is bigger in it. She entertained herself for about 10 minutes, she looked at the toys, and bounced herself a little bit, but was not too active. She was very tired today, and she ate at around 6:30 and fell asleep in her swing around 7:00. We were just sitting down for dinner, then we played a game. before we knew it it was 10:30 and she was still asleep. So we woke her up and fed her a 4 ounce bottle. Then at 11:45 I gave her a 25 dose of Minocycline in 4 ml of apple juice. I tried a little less thinking it would be less to make her drink. She was asleep and woke up and didn't like the taste of it. It took me about 20 minutes to give it to her and she cried and fussed the whole time, half asleep, I kept giving it to her, squirting it in, or having her suck it, then she would taste it, cry and fall back asleep. I think tomorrow I will go back to the 5ml and maybe even add more sugar. I have to find a balance that the taste is desirable, to her otherwise she will spit it up and not get any medicine.
Sunday, July 27, 2008
Day 10 Sunday 7/27
Holly was very playful this morning. Her granny reports that they had tummy time, ocean time, and they also walked around the back yard. She was very talkative when she met her great granny this afternoon, and we went out to lunch and shopping again, she was very curious looking at all the things at the stores. i got her a new bouncy ball full of glitter that spins and makes cool swirl patterns and she really likes it. her granny got her some number flashcards but we haven't played with them yet. She has been chewing on things a lot, her fingers always and she has begun to actually grab her tongue with her hand, so she gets lots of oral stimulation. We sang songs, read stories, and played with the shakers.
She has been very smiley and playful and talkative, even to new people when she first meets them. She has been standing on her full weight, but not balancing yet, she has also been sitting with some back support. She seems to recognize the camera, and it is almost as if she poses when i am going to take a picture. She also 100% knows her bottle, and will stop fussing when I begin to make it for her, she has been trying to "help" feed herself, and her granny isn't very good at feeding her, because when she helps she often pushes the bottle out of her mouth, so she has been eating often short snacks, and her sleeping pattern is all off due to the visitors, she doesn't get her long morning nap as usual, so she is a bit more cranky during the day when she doesn't get her need met right away, so I am going to try and get her back on schedule, but not stress about it until after the visitors leave.
I have been trying to do the imitation game, but Holly has not really been reciprocating. We gave her food at 7:30, and she took her Minocycline 25 dose at around 8:45 with 5 ML of apple Juice. She didn't like it but she did drink it all down. I was able to get her to sleep within an hour, and she stayed asleep until 5:00 am ish.
Saturday, July 26, 2008
It's still tough to give Holly the medicine, even with the apple juice, but were getting better. Last night it took 45 minutes and she was very resistant and crying the whole time, tonight it went much smoother, only took a few minutes, though she wasn't happy. I think it makes it tough because we have to give it to her between feedings, and she's not really hungry.
She's had a busy weekend, her granny is visiting and her great-grandmother as well (my grandmother). She's been very playful and well behaved. I don't think she's sleeping any more or less than usual but her sleep schedule is getting all jumbled up, partly because of all the activity with the visitors. She was very playful this morning, and yesterday we put her in the bouncer seat (it's too big for her but we put some heavy books under her feet so she can reach the "floor"). She likes that because she can be upright, but it supports her weight and her head somewhat, so she doesn't get tired. She played in there for almost a half hour before she wanted attention.
We've also been reading to her often, she really pays attention to the pictures and reaches out to grab the pages. But she will be still and focused while I'm reading the page, and then vocal and playful while I'm moving to the next page. She does get bored after about one and a half books (about 8-10 minutes) and we stop and do something else.
Today we had a fun outing, but made sure holly stayed in the shade. She liked walking around the farmer's market and looking around. Then we went to lunch where she sat on the table and reached down to look at and play with her toes. It was a hot day so when we got home we took a cool bath, and she had fun splashing in the water. Then she had a nice long and complete massage.
Tonight was very hard. Holly ate at around 7:15 and I was afraid that she would sleep through, so I moved her from her swing at 8:15 to give her her medicine 25 . This woke her and she was grumpy, she did not want to drink at all, she would give me a yucky face, so I tried a normal bottle of apple juice to see if she would drink that with no medicine. She took a few sips, so I decided to add the medicine into it, but this was far too much juice, and she was not hungry, so it was 10:00 PM before she would drink it all, and me was unhappy the whole time. Then she fell asleep, but woke up at 10:45 Hysterical and "starving" so we gave her a bottle even thought it had not been a full hour, but she had last eaten 3.5 hours earlier, so she was very very hungry.
In the evening we read her stories from a new picture book made by her Granny that has photo's of all her relatives and she seems to recognize some of them, like her oma and opa from when they were visiting, and was even helping us turn the pages. She played in her bouncer during dinner, and used her left arm to reach for some of the toys.
Friday, July 25, 2008
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.
Thursday, July 24, 2008
Here are some notes from the week below from Dad:
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.
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.
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.
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.
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.
Wednesday, July 23, 2008
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.
Tuesday, July 22, 2008
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.
Sunday, July 20, 2008
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.
Friday, July 18, 2008
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.
Thursday, July 17, 2008
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.
Tuesday, July 15, 2008
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.