A Little of This, A Little of That

Not too much to report on, this has been a bit of a low key week. I think it is because I am still batteling this allergy thing, it acts like a sucky cough and I am congested and can't breath half the time, but it's not Ashma and its not a cold, it is just compacted sinus from the weather changes, so there isn't much I can do. Today my glads were swollen and hurt, I can't sleep because when I lay down I have a coughing fit which wakes Holly and is well pretty uncomfortable, so transitioning from awake to asleep and vice versa is a killer. Whine whine whine.... blah I know....

My little bubble butt has been a pain when it comes too sleeping too. Isn't she cute sticking her bum in the air like that its her favorite way to sleep, well and then some of the time she has her blanket over her head too. She likes to wedge her self into the corner pressing up against the crib. But she has been fighting her naps and not wanting to go to bed, the other day she had a night terror again, this one was really bad. That day she had only taken two thirty minute naps, but I wasn;t expecting it because it was too naps and she just woke up early from them and wasn;t cranky and fell asleep right away, but minutes after we transfered her into the crib she woke screaming.

This one was so bad she threw up several times. I was standing in her room Joel had just handed her to me in hopes that maybe I could sooth her, but her eyes were still closed so I realized it was a night terror and then up came the vomit and all I could think was the excorsit. It was horrifying and I was covered in it. I had to undress both of us all the while she was screaming and then I changed her and cleaned everything up, and I took her into bed and just held her tight. All the while her eyes were still closed and she was still screaming like a banshee. After a few more minutes she would settle whimper and then scream.. this went on for another several minutes, I don't remember if I gave her another bottle at this point, I may have and then she threw up again, this time wasn't very bad, more like a spit up from a cough, but this time it it seemed to wake her up a little bit. So she started to look around. We took her at this point into the living room and put on baby Einstien. She was still crying quiet a bit and it didn't help much but then we went to lay down again and this time she was gulping and whimpering but eventually settled. the whole ordeal was maybe 30-40 minutes, but Joel said it felt like forever. I think the scary part is that she isn't reachable when she is in that state, Joel tries to wake her and engage her and talk to her, I have read that that makes it worse, and you become part of the nightmare, so i like to be in the dark dark and just hold her tight and be there and she eventually calms, but it is incredibly humbling to be so out of control and unable to do anything to help. Its pretty sad that she has been having these night terrors so young, they say they don;t start until closer to two years old, but she has had a hand full now, and I know thats what it is.

Today she refused to go down for her mornign nap until almost 11:40 and luckily Sally her PT was able to come back at 1:45 instead of 12:30 letting her sleep for an extra hour, but then at 5:00 even though she was yawning I tried to put her down for a nap and she refused and got pretty cranky about it, so we got up to play and then Joel tried to put her to bed around 9:00 because she was tired and had been awake for seven hours, but she was having none of it, so I calmed her down and waited and then we tried again at 10:15, we had Karma and Saneesh over and we planned on watching lost, but she refused to let Joel put her down, as soon as I left the room she would scream, I would sing or hum or hold her and she would be calm, then if I tried to leave she would yell, so finally joel told them to leave and that I had to put her to bed. While I was laying down with her she stayed calm, but it took about 30 minutes for her to fall asleep and it was almost 11:00.


Doesn't she look like such a big girl in these pictures, I am remembering back to when I first made these pillows and she used them to pull up on and now she is big enough to sit on them like a chair, it is amazing. Every time we turn around she is taking something off of the table that we didn;t think she could reach so she is getting taller by the minute. She isn't really using her sippy cup well, but she is getting more practice with it daily, we fill it with juice and she likes to shake it and walk around with it she takes a couple of sips here and there, but she isn;t really drinking a lot. But its a start and I am Happy with the progress.

Sally was thrilled with Holly's walking today. She says she is very controlled and she was impressed with her turning and piviting and even her falling is slow and controlled. She is navigating obsticles like pillows or toys on the floor, and taking mini steps up or down over door stops or on and off the carpet. She is even squating down picking up a toy and then walking while holding onto it. She has the skills to stand on her own rather then pull up but hasn't figured that out yet, so it is one of the things we worked on today with Sally. She showed her a few times how to do it. Our session went pretty well.

On Monday we missed our playdate at Chloe's because Holly refused to sleep in the morning, and went down at 2:30, since the playdate starts at 3:00 and she slept till 5:00 we didn't go. I have een pretty busy all week and since falling alseep hasn't been easy I haven't been napping with Holly when she naps, as a result of that I have been pretty tired myself. I guess the apple doesn;t fall far fromt he tree, with a mommy who has sleeping issues, of course she will too. It is sorta scary the things that you see in your kids that simply can't be learned, and present themselves at such a young age.

Yesterday we went to the Eye Doctor, he was wonderful.. he was a pediatric opthamologist and said that holly's eyes were healthy. There were two conditions that are common for kids with Fragile X that dr. hagerman wanted us to check up on, and she was fine, but he said we should come back in a year for another visit, to do a yearly check-up until about 4. At that age, she should be able to do a regular vision test and if her eyes are still healthy then she gets turned over to the pediatrician for checkups during well visits, until she has issues with the vision tests. Which we of course hope won't happen.

We found ourselves rushing out of the house becasue again she went down for her nap late and I wanted to give her every possible moment of sleep before waking her to transfer into the car, and the ride there was about 30 minutes, afterwards she got very cranky and did not want to be in the car seat so we headed over to Sadie Dey's and I let her play for the rest of the afternoon. She didn't go down for another nap till almost 7:00 and slept till 8:00 so of course she was up till midnight that ngiht too... man I should stop whining about sleep issues, can you see this is a theme.. I should call this the gripe and moan post.

I have just had a lot to do, I had a WASC conference call this week, today in fact, which went swimmingly, but I had to rush to review and analyze three reports over the weekend, and I was the lead reader so I was in charge of the call, which was a little stressful of course until the call started. But also I am dealing with an issue related to the title company, apparently someone things there is a judgement against my house from the previous owener that the title insurance didn;t catch, of course this is from 2004 when I bough the house, and the original Judgement was 2000. So it is a pain in my butt that I have to dig out my title insurance for my storage files of 5 years ago, and then find the office and go down there and deal with this, because of bad debt that the previous owner had, I mean why doesn;t the lawyer go chase him down and find him rather then relying on me a responcible person to clean up his mess. Well tomorrow we are having a playdate over here, so I will try and remember to take a bunch of pictures and have a happy post posted soon!

Life is good, I am just in a whiney mood. We are both feeling worn out, but we are hanging in there.

Mid Week Updates

This past weekend was pretty busy. We had some friends, Tony and Tara visiting from out of town, here for GDC and scoping out the area in hopes to maybe move here. We met them in the afternoon and went to a cool SciFi bookstore called Dark Carnival. After we went to down town Berkeley, walked around checked out a comic book store and got some Gelato.



Later we met some mutual friends. Mike, Diana, and little Otter over at our house and we had dinner in. Joel loves to cook for friends and it is so fun to have people over for dinner. Especially when they have a baby for Holly to play with! Earlier in the day Holly and I went shopping at Costco to get some dinner supplies. I found some fresh salmon for 12$ and it was enough to feed 6 people, large portions (normally in a restaurant for 12$ each) Joel had just read in his Cook's Illustrated magazine some tips on how to keep it from sticking to the grill, and it worked like a charm. Everyone loved it. He also made some potatoes and asparagus from our veggie box and threw on some chick for me and a few Garlic Chicken Sausages for everyone to snack on.



I love Costco, when you can buy in bulk for some things you get amazing prices, and while for just the two of us, it would have been a waist, for a small gathering it was perfect. We also get fresh chicken breasts in bulk there and Joel will prepare some dinners and freeze them, for easy access later in the week. I also picked up some wine, which was a good deal and everyone enjoyed that. Holly and Otter hung out for a bit. He is only 4 months old, but a hit of the visit was getting to weigh him on our scale. He was hear about 3 weeks ago and gained 1.5 lbs topping out at 16.5 lbs, only 2.5 lbs lighter then Holly and she is a year old. He liked hanging in her little nest, and we tried him in the little red chair which he liked last time, but with the added bulk of his cloth diaper, he is too big for it now.. Its amazing.On Sunday we ran some errands and cleaned the house and rested from the week.




Monday was crazy busy. Holly had Therapy in the morning with Katie, it had been almost 2 weeks since she had seen her do to some reschedules and illness. This session was to be video taped for her to share with her colleagues and it was fun to work the camera and watch them play.After that Paige and Amy came over. Paige is 3. It was amazing having her. We joke about Holly leaving a path of destruction in her wake "Hollzilla" but Paige, in ten minutes did what it would take Holly an entire day to do. Every bag of blocks and toy was dumped out and she had a blast running from new item to new item checking everything out. It was certainly a glimpse into my future, and while slightly overwhelming, it was so fun.



She and Holly played remarkably well. Holly would follow her around as fast as she could like a little puppy wanting to play with and touch everything Paige was playing with. Paige has seen video's of Holly in the ball pit, and she wanted to try. I posted these on Wednesday but they don;t really do the experience justice. Paige would hide and bury herself under the balls and Holly would look for her. Then she would press her face when she found her, and then push her own face into the net and make a funny face at her. They did this over and over. Then Paige would dump out ball and Holly would hold them up for her to grab and Holly was laughing hysterically. She was having so much fun, I don;t think I have ever seen her laugh so much, she was utterly mesmerized by Paige and how much fun Paige was having in the ball pit.Eventually we had to wind things down, Paige had to go home for dinner with her Dad, Amy was a former co-worker of mine, so while we mostly talked mommy stuff i did get a few updates on my old job which was fun too. We certainly will be getting together again soon.



Then I was off to pick up daddy for the last day of our parenting workshop. Holly exhausted fell fast asleep in the car and slept the first 30 or so minutes of the workshop. Once she woke and we fed and changed her she was very cuddly. She likes to wake up slow and stay in my arms for awhile. But then of course Seth came and she just had to go and play with him. She was so well behaved. Now that she was pretty familiar with the space and had done the rounds she was happy to stay in the general vicinity of Mom and Dad and play with Seth and her toys.





Lots of the other parents had coffee cups and the little ones kept trying to get into them, so we gave them a cup of there own to play with, Seth was showing Holly how it works. They are just about the same age, I think Holly might be 1-2 weeks older. It is amazing watching two kids of the almost exact same age play together, the similarities and differences are so neat. At the end of the class when it was time to go, Seth gave Holly a hug. It was so sweet.



Well other then this Chaos, I decided that I would hang low on Tuesday I originally had a play date at a Bunny Farm and an Eye Doctor Appt scheduled, but the Dr. Called to Cancel, so I figured lets stay in and rest we can go see Bunnies another time, these play dates happen Monthly. It was a nice relaxing day which i spent most of it playing with Holly and reading a parenting book for my Playgroup / Book Club on Thursday. I will post more about that later.

Finally the weekend also had some sucky parts too. On Friday it seemed we may have forgotten to lock our car door, and when I went down to go shopping everything had been riffled through. I had about 20$ in change that was taken and sadly my GPS and cell phone charger were also missing. I was mostly mad that I lost all my addresses I had about 50 in there from all the stuff we had been doing, so it was annoying. It was hidden from view inside a compartment, so a passer by would not see it, I thought this would be good enough, even though Joel always tells me to bring it upstairs. But I guess with someone actually going through everything its not safe. Thank god though that my stroller, fast track, and Garage Door Opened were not taken, and nothing was missing from the garage. When I got to Costco I got a new GPS, so I am out 20$ Plus 169$ for the replacement, and a Pair of Sunglasses.

Sadly, however we are dumb, and the next night our other car got broken into. That is my "sports car" and the battery has been dead. When the grannies were visiting we had triple A jump it and i drove around for over an hour, then the next day they went to drive it and it was dead. We haven't even looked at it since, I haven't had time to deal with it. Well we aren't quite sure if it was too left unlocked, or if the person crawled in through the truck, which i can;t seem to lock when the battery is dead, but this time, it looks as if someone was "living" in my car. I heard noises about 1:00 Am and Joel had woken up, we looked out and saw something in the street that later we discovered were my floor maps. When he went to investigate and discovered it was torn up we called the cops. I made a report on both cars at this time. But inside we found a bag of leftover pizza, a sweat shirt and dress and shoes and even a wig. We don;t know if they had been there for several days or just that night, since we hadn't looked into the car for a few weeks, and the windows are tinted. I didn't have anything of value that I recall in there, so nothing seemed to be missing.

The next morning Joel cleaned all the stuff out. Then tonight, we were shocked when a woman knocked on our door and admitted she was sleeping in the car and she was so sorry and please don;t call the cops on her but can she have her stuff back. Joel told her it was in bags in the trash and she could go and get it. He said she didn't even look like she was homeless, but was very skinny and tired looking. it made me so sad. and in all honesty, I don;t think this was related to the theft from the night before, but then again, I am a very trusting person. Crazy Isn't it!

Monday Mumblings

Monday was such a hectic day. We had our 1 year evaluation for the Regional Center. Holly was like, what are all these people doing here at the same time? We had both Katie and Sally in addition to Leela our Case manager, and then Joel came home from work also. We went through Holly’s reports. Some of Holly’s main issues continue to be her tone, her hip extension makes it harder for her to work, she is still sort of bent, her butt sticking out so it is harder for her to balance, and she isn’t bouncing on her legs yet, but aside from the isolated items that are severely lagging, she is in the 11-13 month range for Gross Motor Skills.

Her Cognitive and Fine Motor skills were both between 9-10 months, as are her Self help, and Social, with a few scattered skills as high as 14 months, and as low as 6 months in all areas. She has such a range it is difficult to pin down where she really is. For example she is beginning to stack donuts, but not stacking blocks, or scribbling, pointing, clapping. Her language was the “worst” section where her expressive is about 6 months and her receptive around 8 months, which is in par with what the Speech Therapist informally told me last week.

Leela agreed to recommend a feeding therapist, or at least an OT evaluation with a focus on Feeding, Oral Motor, and Oral Aversion. Also based on the informal Sensory evaluation that Sally completed we are going to keep an eye on her Sensory issues, including her Sensory seeking behaviors and her Oral Aversions.

In general it was pretty uneventful because I had seen all of the reports in advanced and worked with both therapist in writing them up and selecting goals. There are a few goals that Holly has not met yet that will be carried over to her next eval and the new ones will be added. I am assuming that the existing services wil be renewed and that we will get a follow up on scheduling the additional evaluation, and then I will continue to pursue Speech therapy, and while there is overlap, I really don’t want Holly to get delayed in language so I would like to have her see someone to help us help her stay current, or get current, but the feeding therapist should help her learn to use her tongue better so speech may naturally approve. Leela mentioned that she might be able to get a monthly speech consultant to work with the parents, and out insurance might cover it as well, but all will be reveled in about 2-3 weeks once I get the reports in. I hate the waiting game.

We are also having Holly’s hearing checked, just to make sure there aren’t any issues due to the fluid and ear aches and speech delays. So that’s about it on that update.

These pictures are from Monday night, we went to our positive parenting workshop. We tried to get Holly to stay in the Child care room, but it wasn’t so successful. She was ok when we first dropped her off, but that lasted only about 5 minutes and when she got Hungry it was too much to handle and she had a meltdown, I fed her and then Joel tried to bring her back in. He sat with her for a few minutes till she seemed to be having fun and playing but as soon as he walked out of the room she crawled after him and cried.

There was another almost 12 month old playing in the main room, so we brought her in, but she is much more mischievous then Seth the other little boy and she just wanted to crawl all over and get into everyone’s purses and knock over the coffee cups and I ended up sitting on the floor chasing her around most of the time. She did play with Seth some and they had fun and it was pretty cute. But then she had a poopie and got very cranky because her but is still soar. It is mostly healed, if I didn’t mention this she had a diaper rash that turned into a slight yeast infection and there is a section that it is a little raw so it is like open and bleeds if I try and rub and clean it, so it hurts her. Today it is almost gone but for that one red spot, so we have been treating it and letting her soak in the bath, but it is an uphill battle.

Class was pretty fun, but it was hard to both pay attention and keep an eye on Holly. I wanted to get some pictures of her Playing with Seth, but I got a picture of the mess she made instead.

Well not sure what else to update on… But this was how my week started.

Parent's Night Out

This weekend was fun. The Grannies were here on Saturday and left on Sunday Morning. So Sunday was mainly spent just resting, cleaning, organizing and having some time with just the three of us.. Mommy also snuck in a massage appointment in the morning with a hot tub, and boy did she need it! I haven’t had one since I visited my mom in Florida, and it had been 6 months since I last saw my Massage therapist. Well my shoulder has been killing me because I am sleeping on it funny when I put Holly into bed with me every night, I have to use one arm to pet her for anywhere between 10-90 minutes and my arm gets so tired, but it’s actually the other shoulder that I am laying on that is hurting. The therapist said that I should put a heating pad under it before I lay down on it and maybe that will help and then stretch it out afterwards.

It was so nice however to soak in the hot tub and get pampered. I stopped when I quit my job, we all need to make sacrifices, but now I am thinking maybe I should go 1 time every 4-6 weeks, it makes such a big difference to help me relax and rejuvenate, I mean being home with Holly 5 days a week, 10 hours a day is a lot of work, so I think I deserve it, now I just have to see how I can squeeze it out of my budget.

I thought this little Jean dress was cute.. it was a gift from Isabel, it is size T2 which is hard to beleive and didn't fit Sarah, we liked it, but it barely fit Holly, there is another outfit that I Love and I can;t get her head through the top, its also a T2 I just don;t get how they do sizes!

This is Holly showing everyone that she is capable of having a tantrum, this is what happens when Mommy tries to Blog dring the day before she goes to bed and stops paying attention to her for a few seconds.. But I think she has been extra clingy because I have been leaving her with the grannies in the morning, and for a few babysitting sessions, so she really wants Mommy when I am home.



I was so grateful for the Grannies on Saturday; they babysat for almost 5 hours while we went to a very long afternoon Movie. We headed out around 2:30 hoping to make a 2:45 but then decided to wait for the 3:40 so we could eat some lunch before hand and stop by the bookstore. The 3:40 movie was also in IMAX and the other wasn’t so it was a bonus. We saw Watchmen.

So advance notice there may be spoiler’s here.. I actually really liked this movie, much more then I was expecting it to. I also however loved 300 and really liked Sin City. It had a similar feel, but it also reminded me of that Beatles Song Movie that was out a few years back. The setting was an alternate Earth where in the 20-30 the “Minute Men” were these vigilantes who fought crime in “Masks” But in the “Present Time” the cold war was still on, election terms limits was rescinded and Nixon was reelected 5 times, we “won” Vietnam.. Yet the world was a pretty ugly place, and while at one time, the “Watchmen” were embarrassed in present two were out-ed, and the rest were in hiding, and pretty much banned. One of the story hero’s was a complete sociopath, not unlike jack Bower, but much worse, and it really made you think about the fine line between what justifies an action like “murder” a criminal kills someone it is Murder, a Cop or the Death penalty does, and well that’s ok, or in War, it’s OK, not that, that was at all the theme of the story, but it made me think about that kind of thing.


Anyway, we saw the Reality juxtaposed with this super hero story and modern day songs and the transitions and cinematography was just amazing, the way it was edited and pulled you in, for the first 1.2 of the movie anyways. Then there was a point where it got too narrative, and they explained too much instead of showing, and the romance was a little tired, and while the “end” of the story itself didn’t bother me, the way the film-maker executed the last act was disappointing in light of the amazing job they did the first 2 hours of the film.

The special effects were amazing, it was very pretty to look at and the characters were neat. From my friends who read the comic book they said that it stuck pretty close to the original story.. Also a little background, apparently it has been literally decades that people have been trying to make this film, and those in the “know” thought that finally they did a pretty darn good job. So while I really liked it, because of the slight letdown at the end I can’t say I loved it, or it was “great”

So that was my weekend. Holly did great with the Babysitting, but she was super happy to see Mommy once I got home. Since it was the afternoon it worked well, it was her best time of day, she had just woke up from a nap, and she was at home in her own environment, so that was good too.

L is for Lion

I was tagged by Quirky Mom with the Letter L If you are interested in your own letter leave me a comment.

Ten things:

L is for:

Love: The most important of all things. I don’t think I really knew Love until I had my daughter Holly. I of course Love my Family and My Husband, but the Love of a Child so unconditional, so forgiving, if someone tried to explain it to me before having Holly I would have thought that I knew what they meant, but it is only after her that I truly know. After having Holly I told my mom, now I understand just how much you love me. It is a love like no other.

Laughter: Is a healer of all things. Just when I think I may be at the end of my rope on no sleep and feeling sick and weary and grumpy Holly will do something so silly or cute that I just have to laugh and it makes everything else go away. I think it might have something to do with that first L word J but also Joel makes me laugh, he can’t help it and he loves when I laugh, it is apparently easy to do and I can never stay mad at him because he will say or do something goofy and make me laugh.

Lucky: Is how I feel now that I have Holly. I realize that there may be challenges ahead and there will be delays and life won’t always be as easy as it is for other people, but Holly is a blessing and I feel so lucky to have her, and well I think she is doing so far much better then feared and I feel lucky with each new development she makes and grateful that she is such a wonderful child. I also feel lucky for having Joel the most amazing husband, I have only learned to appreciate him more since Holly was born and I think she has brought us even closer together which I didn’t think was possible.

Learning: Is a lifetime pursuit. I love to learn so much that I made a career out of education, school, and learning. I have always loved to learn new things whether it is a lecture or a discover magazine. Now I get to learn and discover through the eyes of my child which makes it even more magical. Not only do I get to share in her discovery and awe, but I also get to learn about her, who she is and what makes her tick.

Language: has never seemed so important to me then now. When I was in college I studied Linguistics and Creative Writing, among other things. I was fascinated with the history of language how it evolved and grew. I loved learning about sounds and how they form, accents and regional dialects. I also love the use of language, witty statements and clever dialog. But now I am learning the difference between language and communication. The lack of language can be very frustrating and I am learning how to communicate without it. I am also obsessed with it as I work with Holly on learning to speak and trying to remember back to my college days of diphthongs, bilabial, open vowels - wondering if any of it is useful in helping her little mouth shape the sounds she needs to make words. But mostly I have to remind myself that without language there is still communication, and to appreciate that too.

Lazy: is how I am feeling this week. I am so tired from Holly being sick, and from me being sick, and from her being clingy and needing to lie on mama every moment of the day. Tired after a long day of hard but ever rewarding work not having the energy to clean, keep-up with chores or basically do anything responsible, So right now I am feeling very lazy. I also feel like I should be doing more with Holly. Because my days have been long I let her play independently and sort of zone out watching her, or catch up on blogs and writing posts and checking email, at least when she is not hanging on me or trying to knock down the laptop. I feel like developmentally I should be doing something educational with her every moment of the day, and when she is cranky and grumpy and I am tired and I put on Baby Einstein to give us both a break I feel like I am being lazy. But then again, I am known to be rather hard on myself and need to remember to cut myself some slack every once in a while. She is a very active and attended to baby.

Legends: Are something I grew up on and can’t wait to share with my Daughter. First there are stories about my family and Holly’s ancestors. Also there are fairy tales and ghost stories and legends of mythical places and creatures and beings that fill my imagination. I love imagination and that can be sparked by so many legends. Greek Gods, Water Nymphs, Dragons, and Unicorns, I can’t wait to begin to share these legends with Holly. Well I have already begun telling her some stories, but I look forward to when she is older and we can watch movies and read books like The Tales of Narnia, Lord of the Rings, His Dark Materials, The Last Unicorn, or even Harry Potter.

Linger: Is what I tend to do at social gatherings and events. I can’t help myself, but I am often the last one to leave. I tend to linger, I don’t like things to end and I want more. I will linger at the end of a concert and watch as the roadies tear down, I will linger after a Movie and watch the credits until the very end. I will linger after a party because it was over too fast and now that the crowd has thinned there is more time to bond with and chat with the host. I will linger at a Friend’s house after a play date because we have had so much fun and it has been so long since we have gotten together that I don’t want our fun to end. I also linger around the edges, overhearing a conversation that perhaps I can add something useful too, Linger when there is drama because I am curious, and linger at the end of the night because I don’t want to go to bed. Maybe it’s a bad habit, but it’s me.

Left: is the side of the country I live on and pretty much defines much of the city I live in. Perhaps Liberal is a better L word to define this, but I embrace Berkeley and its politics even when at times the notions are even a little left for me. I believe is social justice and paying higher taxes for schools and roads and parks. (from Wikipedia) I thought this was interesting.. and well it fits: In politics, left-wing, leftist, and the Left are terms applied to socially progressive and egalitarian positions. Originally, during the French Revolution, left-wing referred to seating arrangements in parliament; those who sat on the left opposed the monarchy and supported radical reform.

Limbo: Is how I sometimes feel or even “Lost” when it comes to knowing what is best for Holly and what her future will hold. I am so grateful to know her diagnosis up front, but it is frustrating sometimes because it is always there in the back shelf of my mind, will she continue to develop at this rate, will she be able to learn to read and do math, will she be in a mainstream classroom, is college a dream too far to think about, will she one day have a family of her own. Now obviously all those “Big” thoughts aren’t usually right there, it is more like what will potty training be like, when will she say her first word. When will she begin to feed herself? But really I feel like I am in Limbo, because I don’t know what behavior is normal development? What behavior is from Fragile X and what is just nothing at all. Limbo, because I sometimes don’t know if I should be upfront and tell people about her diagnosis, or if it is really not important to mention at all. Limbo because before this I never felt like I was out of control, but that is a feeling I am learning to embrace.

Baby Holly is a Sick Holly

In honor of Holly regressing back to the days of sleeping with Mommy I have posted some baby Holly pictures to share with all of you.

This weekend little Holly has a cough and sniffles again. She has decided this means she wants to pretend she is a few weeks old again and wakes up several times every night and can old rest and sleep if she is in mommy’s arms. She actually went to bed twice at 9:30 but then she woke up at around 2:00 am. I tried to sooth her back to sleep and then rock her but as soon as I set her down, after 10 minutes, 20 minutes, even 30 minutes it was a no go. I laid in bed with her and she slept for a little bit but then when it was time for a transfer she woke up.

The first night it took 3 hours and two bottles before she was asleep again. It was cute for a few minutes she laid in bed with Joel, but there wasn’t room for me on the little edge of the bed so I got up.

I wanted to go back out to the living room to finish some paperwork, but as soon as I would leave the room she would toss and turn and whimper. It took me ten minutes to ease out and after being out for only about 15 she was fussing again.

Last night when she woke up it was impossible to even try and put her down so eventually I crawled into bed holding her and laid back in a sitting position on a corner pillow.

This was how I slept the entire first week she was home with us and it brought back a lot of memories. She was so cute. She is a very active sleeper, and while laying in my arms for about 90 minutes she turned herself around and sat up and flopped over about a dozen times, but since I was holding her I could just adjust my arms for whatever position she wanted to be in and it never really woke her all the way up.

Her new thing is sleeping with her butt in the air. I think it totally wakes her up. She has her face smooshed and to the side and her knees bent under her. I think because she likes this position she ends up sitting and crawling in her sleep. Joel told me he often sees her like that in the morning, which I hadn’t realized.

So after three nights of her waking up for several hours in the AM I decided maybe I shouldn’t put her to bed so early, but tonight she was exhausted again and fell asleep at 9:00.

She didn’t want to go to bed though, as in be put down, so rather than sitting up holding her in the middle of the night she slept in my arms for about 2 hours while I watched some TV until she was pretty settled. That didn’t prevent her from waking up though around 2:00 AM again, but so far I just needed to rock her and she went back to bed again.

So Monday is a Holiday so Holly won’t have any therapy. It has been raining and windy all day.

This morning while Joel was making his coffee he noticed that it was sort of quiet in the living room so he went to look for Holly and didn’t see her right away then realized she was standing against the front window staring out at the rain and the trees and the birds in the park and was in complete awe.

Mostly we just stayed inside as it was very stormy and played and had a quiet weekend. Joel got me some amazing dark chocolate truffles from Scharffenberger for Valentines and they were very delicious.

I was feeling a little stir crazy today so hopefully if the weather isn’t too bad tomorrow maybe Holly and I will venture out. Even though Katie has the day off Joel doesn’t so he will be missed.

This weekend we had some fun playing Rock band and Holly wasn't that into it so we had to take a break but since she was falling asleep early at 9:30 we were able to play in the evening. We watched some TV, she loves her YoGabbaGabba, I tried to watch the Tigger Movie but she wasn't into it. I guess she didn't think it was "Holly TV" so I am not sure what it was about it that made it seem like Grown Up TV when she knows YoGabbaGabba is her show.

Score!

Holly is actually back on her game. I was starting to miss my happy go lucky baby and feeling in a rut of food and sleep battles but today was a good day! On Friday night she went to bed at 9:30 and she didn’t fuss and she stayed asleep until 10:30 this morning. I think the 13 hours did her some good. She didn’t want to eat breakfast, but mom got to sleep through that battle as Dad was up with her this morning. As typical she refused baby food but did snack on puffs. Mom didn’t sleep all day though, I woke up around noon and we played and she was so excited to see me. She crawled over to me and didn’t even want to let me go to the restroom. She is definitely in a clingy phase.

We laid down for her nap around 2:45 and she slept until 4:30. Mom and Dad worked out a deal this weekend. It is one of those Mini game Programming Contests, so Mommy gets to go to the movies and then she watches Holly an equivalent amount of time to let Daddy work on his game. So tomorrow I owe Daddy 4.5 hours of Programming time, and today just after Holly woke from her nap Mommy went to the movies.

So here is the Update from Daddy:

1. Holly is sad when Mommy leaves. The firt time I tried to leave I said goodbye and she tried to follow me out the door and was watching and seemed pretty distraught. So instead of leaving, I went and gave her a big hug and then Daddy took her into the other room to change her and I snuck out, and she didn’t even notice I was missing. (Until I got back, and she was exuberant – Waving her arms and repeating Mama. Joel reported that the only other time she had said Mama while I was gone was when he changed her, so he thinks she is starting to associate it with me.)

2. Holly was a happy cheerful Baby and they had a wonderful time

3. She ate an entire container of Bananas, even texting mommy with the good news. She ate it by the way with no tricks, she opened wide.


4. Holly learned about Gravity and thought it was Hilarious. Check out the Video Here: http://hollyzzdavis.blogspot.com/2009/02/hilarious.html


5. She likes snacking on Puffs


6. She had lots of fun bouncing.


7. She is a tornado that leaves a path of destruction where ever she goes.


8. Daddy and Holly are working on Colors


9. Oh this one is great! She is learning in. She likes to take the Ball from the pit and puts it into her shape sorter box. This was pretty good news from me, as I haven’t had much luck with “in” at all, though she certainly has mastered out.

Which reminds me. A few times she was able to put the Donuts “On” once on the correct stand, but it was easier to pit the large donut on the skinny stand from the block stacker, which was still great, so she is beginning to learn “In” and “On”

10. Holly knows what the remote control is for. We have watched a lot of those baby development shows, and they show how a baby will show a confused face when an object is used incorrectly, or doesn’t do what is expected. So today Daddy was moving the Remote Controls out of Holly’s Reach and she looked towards the TV and it didn’t come on. So looked back at daddy then back at the TV. Why wasn’t it working? So Daddy turned it on, and then off again and she was relieved that it worked just like she thought it should.


This reminds me that yesterday Holly learned about the Pause Button. She is into Cause and Effect lately, for example she knows that when she hits the big button on the phone it makes a dial tone – or hangs up on Oma – and yesterday she learned that when she hits the one yellow button in a sea of black ones on the Tivo remote Yo Gabba Gabba pauses. She had a lovely game of pausing and starting it over and over, making sure she knew just how it worked. This was confirmed later that night when she decided to pause the TV when Mommy and Daddy were watching 30 Rock during dinner. She was quite please with herself and to get our attention, especially when her efforts to get the food off our plate were not successful. Hey – I gave her a bite and she didn’t like it, but that didn’t stop her from coming back for more.


Also, I was a little concerned with the amount of time Holly has been watching TV this week. It isn’t a lot, maybe overall 2-3 episodes of Yo Gabba Gabba or Baby Einstein spread out over 1 day, but she has wanted to watch it almost every day, which is not typical. Usually it is 3 times a week maybe 1 episode each day. We really like Signing Time, and Language Nursery, but when she is cranky or I am trying to get her to nap we watch Lullaby Time or Symphony of Fun. This week it has been every day, several times, and she was cranky and it was the only thing I could do to sooth her, so I was worried that the TV was soothing her and spoke with Katie about it on Friday Morning. We live in an area where lots of people think “TV” is Evil, so I feel guilty about it. Katie however thought I was funny for worrying, and said if she is watching something developmental like Baby Einstein I should not worry, but even more so, she has been out of sorts, and slightly sick, and tired, so it is a good sign that she wants the stimulation, even when she doesn’t have the energy to be playful, but lastly she said she would rather her watch a few hours of TV to give Mommy a reprieve from the fussing and whining, then have me pulling out my hair, because then I am not at the top of my game. So all of this made me feel much much better.


Today we took Holly into the back yard. The ground was still sort of wet from the rain the last few days, so we put shoes on her which she kept knocking off and let her run around in her walker. http://hollyzzdavis.blogspot.com/2009/02/spaceship.html

We walked her around the yard and she specifically liked the Bambo, it tickled her head and she just giggled and scrunched her eyes in anticipation.


So here is mommy’s movie update. I went to see two movies today. First was, “He’s Just Not That Into You” which was a fun chick flick, it had a lot of Cameo’s and big name stars in it, it was a cute ensemble and I enjoyed it

Next was, “The Uninvited” So this was actually not my top choice of movies to see. I love Horror movies and there are a few out at the moment, but this one was at the lower end of my list. It happened to be playing at the right theatre and time so that I could see a double feature. I ended up loving this movie. There was a wonderful and unexpected twist at the end that was a delightful surprise, and rather than a horror it was much more a mystery thriller. But it totally reminded me of the Script I wrote, and gave me a lot of ideas on how to tighten it up and change a few things to bring it up a notch, so who knows maybe I will work on a revision sometime soon.