Three years ago today, it was Memorial Day 2007. I opted to stay inside and rest while my husband and my son went off to spend the day with Scott's family. I know they swam in the pool and had lots of fun. Around 11 am, I got an itch to organize everything. I cleaned out the cabinets under all the sinks. I emptied out the linen closet (something that hadn't been done in the three years we lived here); then organized the items back in. Around 2 pm I started feeling hungry and I was tired of cleaning so I went to my mother's house where she was also hosting a BBQ.
Ah, my last day of being a mother to 1 and I didn't even spend it with my son. After a few hours with my family I decided to clear out. I still had a couple of small items that I wanted to have ready in my bag in case the D-day came so I swung by Stop and Shop. Oh, how happy I was, strolling down the aisles thinking about how my new baby would be. I didn't even know if I was having a girl or a boy.
Once I was home, I relaxed, checked my bag again. Then, at about 9 pm, I started to feel what I thought were contractions. Don't ask me why, but I thought to myself, "oh boy I better eat before this gets serious because who knows when I will eat again, and anyway, this might not really be labor." So I reheated myself some turkey meatloaf and cauliflower. I tried to rest, but the contractions were nagging me and I couldn't get back to sleep. At midnight, I called my ob/gyn's office, I was asked to call back when the contractions were closer together. At 2 am, they were closer together, so I called again. I was instructed to go ahead and meet them at Manchester Hospital. Before Scott and I got our stuff and our son together, it was almost 3 am! We were almost to the hospital when we realized that we forgot the digital camera, so I made Scott turn around. I continued to moan and cry out, and my sweet 4 year old son asked me to "stop making so much noise." I love him!
We dropped Nathaniel off with my mother (2 blocks from the hospital literally, so it made more sense to bring him to her) and we went to meet our new child. During my entrance exam at 3:30 am, I was told I was 6 cm and I was quickly assigned a room. By 5 am I was ready to push!
Our child was not born until almost 7 am due to the fact that I think she was coming down face up instead of face down. The back pain was pretty much unbearable and I couldn't find a position that seemed helpful. You see, I opted against an epidural for both my children. But finally she came and a sweet child was put on my belly.
Those eyes and that small mouth instantly revealed her secrets. I didn't even know if I had a boy or girl and someone reminded me to check between her legs and announce the news. It felt like I was going through trained motions, but I knew there was some devastating news to share, and I just couldn't. I just couldn't bring Scott down. And what would he think of me if I had been wrong? So, I quietly said, "Look, she's a girl." There was no excitement in my voice, no overwhelming joy like I had for my first born. My first born. . . I thought back to when I had him and how the first thing I did was kiss some slimy stranger newborn all over his head and tell him how much I loved him. I tried to do the same thing for my daughter. I kissed her once, and I told her I loved her, but I know it didn't sound convincing.
Soon, before we had even named her, some nurse told us that it seems our daughter might have Down syndrome. No one would know for sure until the results of a blood test came back, but the nurse felt pretty confident of her diagnosis. Scott and I stared at each other. We asked to hold her some more. We were reminded that a name might be appropriate. Scott told the nurses the name that we had planned. It seemed wrong, we had planned that name for a different baby, but it was the only girl name we agreed on, so this new baby was then named Penelope Ringrose.
I focused on doing the motherly things I was supposed to, so the next thing to cross off my list was breastfeeding. Scott and I seem to remember that she latched on pretty well. I nursed on both sides and then cuddled with her until a nurse asked to take her back so they could look her over again.
A couple of hours later a neonatologist walked in and told us that our newborn had some serious cardiac problems because she was unable to sustain her blood oxygen levels. I truly thought that the next words out of his mouth was going to be "We did everything we could, but she is gone." I choked back tears waiting for bad news, but instead, I learned that she was being sustained and that she would need to be transferred to Hartford where she would get a better look and possibly a surgery very soon if needed.
At noon, when she was only five hours old, a team from UConn, took my daughter away to transport her to Hartford Hospital/CCMC's NICU. Scott followed them and I was left alone. I tried to sleep, and I may have for a little bit. It was hard and I was depressed. I could hear the other babies crying for their mothers through the hallway, but I didn't have my baby. I ended up getting discharged at 7 pm, after the nurses made me eat a filling dinner. It was so crazy to think that I was only twelve hours postpartum and I was going across two towns to see my new girl.
Scott picked me up and drove me to Hartford to check everything out. It was so surreal. I was tired, my eyes were puffy from all the crying I did, and I didn't have any clothes that fit me. I also didn't have my baby with me. I will never forget that first trip to the fifth floor, it was dark and quiet on the floor so that the babies could sleep. I scrubbed in and met some professionals. I finally saw my daughter on her warming tray. She was bright red and she looked so irritated. She kept squeezing her already puffy eyes shut and sometimes that made her eyelids flip inside out. Every few moments she would have a sad trembling lip and attempt to cry a little. She seemed like such a stranger, but my heart really did go out to her. What an awful way to start your birthday! I thought.
Well, it really didn't take long for me to fall in love with her. It especially helped when I was allowed to hold her again and also, try to nurse her again when she was ten days old. She ended up having surgery when she was 6 days old to correct a heart defect and she recovered so well. Instead of asking, why me? Why was a burdened with a disabled child? I wonder why I was blessed with such a perfect being. I truly feel so lucky to have been blessed with her.
HAPPY BIRTHDAY MY LITTLE PRINCESS. I know that this year is going to be incredible for you. School will be a challenge, but you will overcome and exceed everyone's expectations!! I love you!
Showing posts with label milestones. Show all posts
Showing posts with label milestones. Show all posts
Friday, May 28, 2010
Friday, April 30, 2010
Penny starts school!
Yesterday was my introduction into the world of PPTs. Well, it may be more accurate to say that my first PPT took place last month when I bravely sat down to a table with five of them and one of me. This was a meeting to discuss whether or not she qualified for services. Since I wasn't worried about the outcome, I didn't bother with reinforcements. At 9:15 am yesterday, my husband and I walked toward a rather large table with almost a dozen educators. I hate to paint a portrait of "sides" as I know we are all on Penny's side, but I have heard enough horror stories to know that sometimes there can be a "them against us" mentality. The people that had my back were Scott and Penny's Birth to Three providers. Penny's occupational therapist is herself a parent advocate and is very knowledgeable in how these proceedings should go. I also have the unfathomable support of Penny's physical therapist. Her attendance at the meeting felt like a wall holding me up. Penny's speech therapist and service coordinator/sped teacher were also present, and each had a chance to speak to Penny's strengths and then go on to discuss her needs in the preschool class.
On the other side of the table were the "NEW" teachers, too numerous to mention. I remember 3 sped teachers from various classrooms, a PT, an OT, and an ST, but I also seem to remember one or two that I can't even remember what their function was. Everyone was nice enough. One of the new teachers (the OT maybe) asked if we had a picture to share before they could get going so that they could have a visual image of her before we discussed her placements. Scott happily passed his I-phone around the table to the sounds of oohs and aahs at his beautiful little princess. Scott and I had typed out a page describing what kind of person Penny is and I happily passed out copies around the table. I had indicated that I wanted a copy of this added to the IEP (individualized education plan) because Scott and I also included some goals of our own in there. The personality summary that I passed out was met with warm reception and I was really happy that Scott and I took the time to do that. It focused somewhat on her sign language skills and that our hope, no, our requirement for her would be that she be placed with a para that can sign and understand her signs.
We had a lot of ground to cover in this session. The objectives on the table were really threefold. Penny is turning 3 at the end of May, so that means she will need services or school in June until the end of the school year. She also qualified for summer school (or EYS, extended year services) and we needed to discuss how that would be organized. Lastly, we had to decide her placement for preschool next school year. There are many options in East Hartford, but until recently, I was made to feel that many did not apply to my Penny.
Since I cannot be flexible as far as driving her there and back for individual services at school (since I will be going to school myself), we had to arrange her services in June in tandem with the bussing schedule. We worked out that Penny will go to school starting May 27 for four Thursdays. I will be able to drop her off at the school at 8:15 and then she will get her ST, PT, OT, and special ed classes back to back. The bus will arrive at the school at 10:30 to bring her across town to the daycare we have chosen for her. Scott and I feel she can handle two hours at this time, and it is not a reduction in services since she is getting ST once a week now anyway. I almost cried when I realized that I WILL be able to see her go to school on her first day and see her when when comes off the bus. School starts on June 1 for me and I thought that she wouldn't start until that week as well and I had already resigned myself to the idea that I would miss her first day.
I have to be honest here and say I was not too happy with the summer school situation. The only summer school they have available are with children with severe, significant delays. As soon as I heard that I said out loud, "Then that is not appropriate for my Penny." On paper, she will attend summer school, but what we will do is find out when and where the ST time slots are and go in for that only. ESY is not about gaining new knowledge, it is about avoiding regression. She will be fine without OT and PT for the summer, but I am worried about any speech skills she may lose.
Now comes the fun part: next school year!! Determining how long her day will be, how many days, what classroom has been a moving target with this school. There are twelve classrooms in this school, some integrated, some with only typical kids, some with very severely delayed children. . . Initially I was told she was going to go into a class with only special needs kids. Even though they know it is against the law, that was the way they were doing it. Then I found out that the afternoon Head Start Program through East Hartford is a fully integrated class that she would be eligible for. There are 18 spots and they fill 10 of them with typical kids and the other eight spots are for students with IEPs. At first I was told it was from 12noon to 2:30 (which is an awful time), but later I found out that if she was picked up, we can get her at 3:30. Scheduling wise, it is much more convenient to pick her up at 3:30 then it would be to be home for the bus at 2:40 and we didn't want to pay for before and after care, so we elected for the no bussing for the way home. I was aware that there was a full day program, but that is only for typically developing kids whose parents are under certain income requirements. Technically, the half day program's typical kids are from lower income families as well. Yesterday, one of the administrators said, "You know what, since the mom will be in school full time, why don't we put Penny in the full day program." I was like, YES!! That was want I wanted, but had been denied because "we make too much money." But this woman made it seem like it would be possible. We ended up getting 1 hour each of OT and PT a week (or maybe 30min) but there is also classroom time for these therapists so Penny will in fact be getting more. We agreed on 90 minute of ST where she will be pulled out once every other week for 30 minutes to work on some skills one on one. Additionally, she will get a couple of hours of special ed instruction to work on cognitive skills along side the integrated class.
Once I get a copy of the PPT I will see if I can share it for anyone that is interested. I feel really good about my "first time" and I am super excited for Penny to start school!! We also get to go in for a visit on Tuesday so she can meet the other kids. I really can't wait for that. only 4 days to go. . .
On the other side of the table were the "NEW" teachers, too numerous to mention. I remember 3 sped teachers from various classrooms, a PT, an OT, and an ST, but I also seem to remember one or two that I can't even remember what their function was. Everyone was nice enough. One of the new teachers (the OT maybe) asked if we had a picture to share before they could get going so that they could have a visual image of her before we discussed her placements. Scott happily passed his I-phone around the table to the sounds of oohs and aahs at his beautiful little princess. Scott and I had typed out a page describing what kind of person Penny is and I happily passed out copies around the table. I had indicated that I wanted a copy of this added to the IEP (individualized education plan) because Scott and I also included some goals of our own in there. The personality summary that I passed out was met with warm reception and I was really happy that Scott and I took the time to do that. It focused somewhat on her sign language skills and that our hope, no, our requirement for her would be that she be placed with a para that can sign and understand her signs.
We had a lot of ground to cover in this session. The objectives on the table were really threefold. Penny is turning 3 at the end of May, so that means she will need services or school in June until the end of the school year. She also qualified for summer school (or EYS, extended year services) and we needed to discuss how that would be organized. Lastly, we had to decide her placement for preschool next school year. There are many options in East Hartford, but until recently, I was made to feel that many did not apply to my Penny.
Since I cannot be flexible as far as driving her there and back for individual services at school (since I will be going to school myself), we had to arrange her services in June in tandem with the bussing schedule. We worked out that Penny will go to school starting May 27 for four Thursdays. I will be able to drop her off at the school at 8:15 and then she will get her ST, PT, OT, and special ed classes back to back. The bus will arrive at the school at 10:30 to bring her across town to the daycare we have chosen for her. Scott and I feel she can handle two hours at this time, and it is not a reduction in services since she is getting ST once a week now anyway. I almost cried when I realized that I WILL be able to see her go to school on her first day and see her when when comes off the bus. School starts on June 1 for me and I thought that she wouldn't start until that week as well and I had already resigned myself to the idea that I would miss her first day.
I have to be honest here and say I was not too happy with the summer school situation. The only summer school they have available are with children with severe, significant delays. As soon as I heard that I said out loud, "Then that is not appropriate for my Penny." On paper, she will attend summer school, but what we will do is find out when and where the ST time slots are and go in for that only. ESY is not about gaining new knowledge, it is about avoiding regression. She will be fine without OT and PT for the summer, but I am worried about any speech skills she may lose.
Now comes the fun part: next school year!! Determining how long her day will be, how many days, what classroom has been a moving target with this school. There are twelve classrooms in this school, some integrated, some with only typical kids, some with very severely delayed children. . . Initially I was told she was going to go into a class with only special needs kids. Even though they know it is against the law, that was the way they were doing it. Then I found out that the afternoon Head Start Program through East Hartford is a fully integrated class that she would be eligible for. There are 18 spots and they fill 10 of them with typical kids and the other eight spots are for students with IEPs. At first I was told it was from 12noon to 2:30 (which is an awful time), but later I found out that if she was picked up, we can get her at 3:30. Scheduling wise, it is much more convenient to pick her up at 3:30 then it would be to be home for the bus at 2:40 and we didn't want to pay for before and after care, so we elected for the no bussing for the way home. I was aware that there was a full day program, but that is only for typically developing kids whose parents are under certain income requirements. Technically, the half day program's typical kids are from lower income families as well. Yesterday, one of the administrators said, "You know what, since the mom will be in school full time, why don't we put Penny in the full day program." I was like, YES!! That was want I wanted, but had been denied because "we make too much money." But this woman made it seem like it would be possible. We ended up getting 1 hour each of OT and PT a week (or maybe 30min) but there is also classroom time for these therapists so Penny will in fact be getting more. We agreed on 90 minute of ST where she will be pulled out once every other week for 30 minutes to work on some skills one on one. Additionally, she will get a couple of hours of special ed instruction to work on cognitive skills along side the integrated class.
Once I get a copy of the PPT I will see if I can share it for anyone that is interested. I feel really good about my "first time" and I am super excited for Penny to start school!! We also get to go in for a visit on Tuesday so she can meet the other kids. I really can't wait for that. only 4 days to go. . .
Wednesday, November 18, 2009
Whew! I've been gone a long time
Since I am no longer working behing a computer eight hours a day, I find it hard to sit down and update my blog. Actually I have been a little busy. I took the Praxis II exam for high school math teachers and I have been finishing up my admissions essay. But more importantly, I have been settling in as a stay at home mom. I actually do house work. Imagine that!! I was so spoiled by Scott. But I need to pull my own weight and do stuff so that he wants to keep me around :)
I have Halloween pictures on my facebook account. Unfortunately, after I got the photos uploaded to facebook, but before I got around to uploading them to flicker or to my external hard drive, the device that I use to connect the memory stick to the pc broke so I have to get a new one. It is only $15 a Walmart, it is just a matter of getting over there. The card slot on my pc has been broken for a while and we lost the cord that came with the camera, it is not a typical usb cable. The cost to replace our Sony cord is $80 so I would rather get that other thing. Too bad, our little princess was great!
Penny is doing all kinds of amazing things and I have to say that I love staying home with to be a part of development. She says circle (kirkle lol) and draws a round sort of thing that closely resembles a circle. She started to say "up" on Monday and yesteday I swear she said "yeah." We do a lot of coloring and work with shapes. I sort of dabbled with color recognition, but I don't know if she is ready for that. She does get really engaged with shapes though so I am going to stick witht that.
We hit a museum once sometimes twice a week since we have free admission to practically everywhere. And I still have time set aside for her naps.
I have Halloween pictures on my facebook account. Unfortunately, after I got the photos uploaded to facebook, but before I got around to uploading them to flicker or to my external hard drive, the device that I use to connect the memory stick to the pc broke so I have to get a new one. It is only $15 a Walmart, it is just a matter of getting over there. The card slot on my pc has been broken for a while and we lost the cord that came with the camera, it is not a typical usb cable. The cost to replace our Sony cord is $80 so I would rather get that other thing. Too bad, our little princess was great!
Penny is doing all kinds of amazing things and I have to say that I love staying home with to be a part of development. She says circle (kirkle lol) and draws a round sort of thing that closely resembles a circle. She started to say "up" on Monday and yesteday I swear she said "yeah." We do a lot of coloring and work with shapes. I sort of dabbled with color recognition, but I don't know if she is ready for that. She does get really engaged with shapes though so I am going to stick witht that.
We hit a museum once sometimes twice a week since we have free admission to practically everywhere. And I still have time set aside for her naps.
Tuesday, October 13, 2009
Random updates from my house
+ Penelope used two signs together this weekend for the first time. She wanted more milk after she finished what she had in her cup. Thus she signed "more" and then "milk." I almost cried!!!
+ My mother took Nathaniel to Chucky E Cheese yesterday for lunch and I met up with them with Penny. She and I played skiball together and she was fascinated by the tickets that came shooting out. Much, much later,we were getting ready to head out, when Penny found a stray ticket. She picked it up and walked across the facility. I didnt' know where she was headed but I followed her at a distance. When she got to the three steps to bring her into another section, I continued to hold back. She gingerly walked down the three steps by herself while holding onto the low railing!!! Her mission was to put the ticket back into the skiball machine. lol!
+ Last week Scott left Penelope unattended in the living room while he got himself dressed to go to work. When he came downstairs to a quiet living room, he discovered Penny chomping down on a 7 oz bar of Hershey's chocolate. (I bought it for a cubscout prop.) He said her face was covered in chocolate and she tried with all her might not to give up the contraband to her father. Needless to say she was upset that he stole her prize away. I told Scott that no man should come between a girl and her chocolate. What was he thinking anyway?!?!?!
+ Penny loves dancing to "All the Single Ladies" by Beyonce and will mimick the "Oh, oh, oh, oh,. . .. oh, oh" part very well. She loves to dance and walk backward for this song. lol!
+ I finally busted out all of Nathaniel's Thomas the train stuff that he accumulated over his younger years. Penny loves them! She and Nathaniel built train systems together this weekend.
+ Penny says these words: "Hot", "Dada", "Down", "Duck", "Ah Done", "Fish", "Juice", "No", "Ha" (Hi) and "What's this?" If she hears a "k" sound in any other word, that is how she designates it. As in book, cow, cat, milk. . . . She calls all these things "Kuh!"
Saturday, August 22, 2009
Penny feeds herself Oatmeal!!
. . .And she is starting to get really good at this too. Barely a mess! I am so proud and impressed with her.
Sunday, August 9, 2009
Some more milestones
One thing I never take for granted with Penelope is her ability to feed herself and try new foods. Too many of her friends have aversions to eating, or are just plain picky eaters. Penelope can use her fork and spoon well enough for a two year old. She can self feed with her fingers like a champ, and she will pretty much try anything once. For example, I was surprised a few weeks back when she tried some sauteed collard greens and continued to ask for more. Also pretty recently, we began to give Penny a whole corn on the cob. She LOVES IT!! Today, I decided to have her try a whole fresh peach. I took the tiniest of bites first just to expose the flesh to her and then I handed it over. She LOVED IT!! When she had chomped off enough to expose the pit, I dug it out for her and tossed it. She demanded that I be quick about handing the fruit back over to her too. She is just so funny, she finished the whole dang thing!
Another thing that I am so incredibly proud of just happened this past Tuesday. We went to this family lake house to have a nice refreshing dip after work. I sat her down, waist high, in the water at the shore. I then showed her about twenty times how to blow bubbles under water in the hopes that she would copy me. I had pretty much given up with Nathaniel asked me to turn around to look at some feat he had accomplished and when I turned back to look at Penny, her face was under the water and she was blowing bubbles just like her Mama had done! Since this day I ask her to blow bubbles during bath time and she has happily complied.
I love getting excited over the little things in life!
Another thing that I am so incredibly proud of just happened this past Tuesday. We went to this family lake house to have a nice refreshing dip after work. I sat her down, waist high, in the water at the shore. I then showed her about twenty times how to blow bubbles under water in the hopes that she would copy me. I had pretty much given up with Nathaniel asked me to turn around to look at some feat he had accomplished and when I turned back to look at Penny, her face was under the water and she was blowing bubbles just like her Mama had done! Since this day I ask her to blow bubbles during bath time and she has happily complied.
I love getting excited over the little things in life!
Wednesday, August 5, 2009
Audiological Exam and Montana Travel
I am such a proud momma to my darling Penelope. She was such an excellent baby during the air travel to Montana. On the way there we had to take three planes. This would have been bad except my kids were truly angels during the whole ordeal, so I was able to manage just fine. We were supposed to leave the CT airport at 7:50. Since I had the baby and I wanted to buckle in the car seat, we arrived at 6 am. *this is a small airport* We learned at the time of arrival that our flight was delayed until 10:50! This was really bad news because our connecting flight in MN departed at 11:40 am. We didn't arrive at MN until about 2pm and we were quickly shoved onto another plane to Salt Lake City in an effort to reroute us to Montana. This proved difficult since we had a hard time getting seats together, but it all worked out. I sat with the kids, Scott in a different row, as well as Matt, Wendy, and Martin peppered elsewhere throughout the fuselage. Once we arrived in SLC, we had some time to breathe during our five hour lay over. Mind you, we had all been up since about 5 am CT time and our flight did not leave until 9:30 UT time. You can imagine we were a little tired. I was a little sad sitting there at the SLC airport knowing that we should have been at MT a few hours ago. The airline provided food vouchers so we were more than fine and we were able to spend very little to no money on food in the airports.
The point I wanted to make was that even with all of these take offs and landings, Penny hardly complained. Maybe a little whining from time to time, but never really upset over the altitude change.
Our travel did get a little stressful in that the rental car store closed at 2pm on Saturdays and we were not arriving until 11pm. There was some big horse show in Kalispell so all the other rental car agencies were booked. AND all the hotels were fully occupied. Now, we had a vacation home lined up, however, we were supposed to meet him between 2pm and 3pm. Several attempts to reach him and apprise him of our situation proved only failure and we were worried that even if we got a car to get off the airport grounds, where would we sleep that night? Moments before we boarded our 9:30 pm departure from SLC, a voice mail was retrieved that indicated that our home would be left open for us and that we could go over the paperwork (i.e. rental payment) the following day. THANK THE LORD!! So we were able to board this plane with that sense of security at least.
Once at the Kalispell, MT (glacier Nat'l park) airport, I sweet-talked my way in to an Alamo minivan. I was charged a disgusting $184 for the night and I had to promise to return the damn thing the very next morning when I got into my Enterprise cars, but we were desperate! I drove the absolute wrong way to the rental house that added about 25 minutes of travel time, because ya know, I wanted to take the scenic route at midnight when there are no street lights, and a deer (or worse, Moose!) could jump onto the road at any second. Damn! I should have taken that damage waiver. :) Luckily, the following morning myself and a few people in my party arrived at Enterprise to pick up our scheduled vehicles. (Thanks Doc Vivien!!) And we traveled back to the airport to hassle the manager about this insane $184. I was able to further sweet-talk the manager into a reasonable $69.99 (after taxes) and I was on my way with a huge smile on my face. I mean, we could have easily paid that in cab fare to the rental house 30 miles away so it was all good.
Additionally, Penny had her audiological exam yesterday at the Glastonbury office of CCMC. This was all new to me, however, I have no doubt that I will learn fast the ways of the ear. She failed her tympanic test, as it was pointed out to me that her graph made a very shallow peak indeed. It was suggested to me by the audiologist that this may indicate fluid in her middle ear, or it may just be her baseline. She said some children with Down syndrome exhibit this sort of graphical representation even though they suffer no hearing loss. Of course, it would have to be up to the actual doctor to report any true diagnosis.
Then we were ushered into the sound booth where I was met with two speakers. One situated on the top left corner of the cubicle, and the other in the top right corner. I was instructed to hold her and let her demonstrate on her own if she is able to determine what side of the room a particular sound was coming from. Basically, each time the administrator spoke into the speaker, Penny exhibited good hearing. If the administrator chose a static or other soft noise, Penny did not do too well. It was funny because even though she would not turn her head as we would have liked to definitively demonstrate that she could tell where and when the sound was produced, she would imitate the sound, thus indicating that she at least heard the noise. It was a really subjective test at that point. Overall she didn't flat out fail, but there were some concerns.
Then the audiologist put this headband thingy on her that positioned two soft round "speakers" directly behind her ears on the nerve itself. The conventional wisdom is that this "noise" bypasses the middle ear by putting sensory information directly on the nerve. She "passed" pretty much 100% of the time. This did reflect that she possibly has some mild hearing loss. We need to proceed with these concerns and see an ENT as soon as we can to explore further. Most likely there is some fluid in her middle ear that muffles the sound she hears in her day to day. She can hear noises, but we want her to be able to hear clearly and I will do whatever it takes!
The point I wanted to make was that even with all of these take offs and landings, Penny hardly complained. Maybe a little whining from time to time, but never really upset over the altitude change.
Our travel did get a little stressful in that the rental car store closed at 2pm on Saturdays and we were not arriving until 11pm. There was some big horse show in Kalispell so all the other rental car agencies were booked. AND all the hotels were fully occupied. Now, we had a vacation home lined up, however, we were supposed to meet him between 2pm and 3pm. Several attempts to reach him and apprise him of our situation proved only failure and we were worried that even if we got a car to get off the airport grounds, where would we sleep that night? Moments before we boarded our 9:30 pm departure from SLC, a voice mail was retrieved that indicated that our home would be left open for us and that we could go over the paperwork (i.e. rental payment) the following day. THANK THE LORD!! So we were able to board this plane with that sense of security at least.
Once at the Kalispell, MT (glacier Nat'l park) airport, I sweet-talked my way in to an Alamo minivan. I was charged a disgusting $184 for the night and I had to promise to return the damn thing the very next morning when I got into my Enterprise cars, but we were desperate! I drove the absolute wrong way to the rental house that added about 25 minutes of travel time, because ya know, I wanted to take the scenic route at midnight when there are no street lights, and a deer (or worse, Moose!) could jump onto the road at any second. Damn! I should have taken that damage waiver. :) Luckily, the following morning myself and a few people in my party arrived at Enterprise to pick up our scheduled vehicles. (Thanks Doc Vivien!!) And we traveled back to the airport to hassle the manager about this insane $184. I was able to further sweet-talk the manager into a reasonable $69.99 (after taxes) and I was on my way with a huge smile on my face. I mean, we could have easily paid that in cab fare to the rental house 30 miles away so it was all good.
Additionally, Penny had her audiological exam yesterday at the Glastonbury office of CCMC. This was all new to me, however, I have no doubt that I will learn fast the ways of the ear. She failed her tympanic test, as it was pointed out to me that her graph made a very shallow peak indeed. It was suggested to me by the audiologist that this may indicate fluid in her middle ear, or it may just be her baseline. She said some children with Down syndrome exhibit this sort of graphical representation even though they suffer no hearing loss. Of course, it would have to be up to the actual doctor to report any true diagnosis.
Then we were ushered into the sound booth where I was met with two speakers. One situated on the top left corner of the cubicle, and the other in the top right corner. I was instructed to hold her and let her demonstrate on her own if she is able to determine what side of the room a particular sound was coming from. Basically, each time the administrator spoke into the speaker, Penny exhibited good hearing. If the administrator chose a static or other soft noise, Penny did not do too well. It was funny because even though she would not turn her head as we would have liked to definitively demonstrate that she could tell where and when the sound was produced, she would imitate the sound, thus indicating that she at least heard the noise. It was a really subjective test at that point. Overall she didn't flat out fail, but there were some concerns.
Then the audiologist put this headband thingy on her that positioned two soft round "speakers" directly behind her ears on the nerve itself. The conventional wisdom is that this "noise" bypasses the middle ear by putting sensory information directly on the nerve. She "passed" pretty much 100% of the time. This did reflect that she possibly has some mild hearing loss. We need to proceed with these concerns and see an ENT as soon as we can to explore further. Most likely there is some fluid in her middle ear that muffles the sound she hears in her day to day. She can hear noises, but we want her to be able to hear clearly and I will do whatever it takes!
Friday, July 24, 2009
Pucker up!!!
So, Penelope has just been an explosion of development lately. I know that it is true now that kids can only work on one thing at a time!! All that hard work to learn how to walk was truly taking up most of her brain power. :)
She knows roughly 40 signs now and sometimes she uses signs that i don't even know. Everyday there is a new one. She will use a modified sign for help when she wants me to turn on a toy of hers and it is really great. No tantrums when she cannot get her toy to work. She simply walks over and puts it in front of me and then signs "Help".
Wednesday I came home from work and there was my happy girl waiting to give me hugs and kisses. Yes, kisses. She puckers up her cute little lips and will smack away until her mouth lands on you. I was so amazed. Honestly, Nathaniel was over 3 when he learned how to kiss. He used to make this noise that sounded like "mmm-baaaah" when he "kissed" us. So I am loving life now that I am getting kisses from my precious little girl.
She knows roughly 40 signs now and sometimes she uses signs that i don't even know. Everyday there is a new one. She will use a modified sign for help when she wants me to turn on a toy of hers and it is really great. No tantrums when she cannot get her toy to work. She simply walks over and puts it in front of me and then signs "Help".
Wednesday I came home from work and there was my happy girl waiting to give me hugs and kisses. Yes, kisses. She puckers up her cute little lips and will smack away until her mouth lands on you. I was so amazed. Honestly, Nathaniel was over 3 when he learned how to kiss. He used to make this noise that sounded like "mmm-baaaah" when he "kissed" us. So I am loving life now that I am getting kisses from my precious little girl.
Monday, July 13, 2009
Little Miss Delicate Fingers
Like most parents, I continue to fall into the trap of obsessing over what my child is not doing, when I need to celebrate more in what Penny is doing. I so wish she could talk to me, is saying "mama" too much to ask?
Don't get me wrong, I love to listen to her beautiful babble. It is wonderful that she vocalizes as much as she does. And she understands a lot. Sometimes I really feel she is saying things but I don't understand her. Like "what's this!" I really think she says that, but it is very high pitched and jumbled I might be making that up. She certainly has a very respectable vocabulary for a 2 year old. (New 2yo at that!) She says dog, duck, all done, dada. And she has at least two dozen signs that she uses consistently.
I love that she is so social. She is never shy around strangers!
One of the things that I have been noticing a lot lately is her ability in fine motor skills. She has been building megablock towers since about Christmas time. Although she does yell at the blocks a lot to get them to cooperate :) She is good at putting tiny pasta or Cherrios in a narrow necked bottle. (Such as a water bottle or empy trial size shampoo bottle) She even amazed the OT last week when she held the bubble wand on her own and showed everyone she could put the wand into the bottle on her own and then proceeded to blow bubbles. I love watching her tiny fingers pick up blueberries and eat them. Her mouth has been blue a lot from this new experience.
Also she is so strong. She will think nothing of picking up the entire bag of megablocks or her farm house or doll house and walk around the house with it. Looking for a suitable place to camp out.
Our new adventure is the terrible twos. I remember that three was much much worse with Nathaniel. Maybe with girls it is two? She has been having temper tantrums more often lately. I know, I should let herself dive down the stairs in an effort to keep her happy. :)
I guess the bottom line here is that of course I think she is wonderful no matter what milestone she has reached yet. I just want her to stay happy and healthy!
Don't get me wrong, I love to listen to her beautiful babble. It is wonderful that she vocalizes as much as she does. And she understands a lot. Sometimes I really feel she is saying things but I don't understand her. Like "what's this!" I really think she says that, but it is very high pitched and jumbled I might be making that up. She certainly has a very respectable vocabulary for a 2 year old. (New 2yo at that!) She says dog, duck, all done, dada. And she has at least two dozen signs that she uses consistently.
I love that she is so social. She is never shy around strangers!
One of the things that I have been noticing a lot lately is her ability in fine motor skills. She has been building megablock towers since about Christmas time. Although she does yell at the blocks a lot to get them to cooperate :) She is good at putting tiny pasta or Cherrios in a narrow necked bottle. (Such as a water bottle or empy trial size shampoo bottle) She even amazed the OT last week when she held the bubble wand on her own and showed everyone she could put the wand into the bottle on her own and then proceeded to blow bubbles. I love watching her tiny fingers pick up blueberries and eat them. Her mouth has been blue a lot from this new experience.
Also she is so strong. She will think nothing of picking up the entire bag of megablocks or her farm house or doll house and walk around the house with it. Looking for a suitable place to camp out.
Our new adventure is the terrible twos. I remember that three was much much worse with Nathaniel. Maybe with girls it is two? She has been having temper tantrums more often lately. I know, I should let herself dive down the stairs in an effort to keep her happy. :)
I guess the bottom line here is that of course I think she is wonderful no matter what milestone she has reached yet. I just want her to stay happy and healthy!
Friday, July 10, 2009
Nathaniel Update
MY LITTLE BOY TURNED 7 ON 7/07. I cannot believe that seven years have gone by so quickly!!!
What I am about to tell you is his secret. If you see Nathaniel, you cannot mention this to him otherwise I might be in big trouble. But it is too juicy not to tell people. :)
Nathaniel told me the other day that he will have to marry his friend Satiria. I asked him why, do you love her? He told me no, he kissed her so now he has to marry her. WHAT?!?!?!? I asked him how this happened. He told me that first he kissed her on the cheek and then he kissed her on the lips. How is this starting already?
Last night he announced that she is his girlfriend. But he was really sheepish about it. I just hope he doesn't get his heart broken. Although, she did call to hang out with him last night as well (before the announcement) and Nathaniel declined the offer. He would rather play video games than hang out with his girlfriend. So typical of a guy!!!!
What I am about to tell you is his secret. If you see Nathaniel, you cannot mention this to him otherwise I might be in big trouble. But it is too juicy not to tell people. :)
Nathaniel told me the other day that he will have to marry his friend Satiria. I asked him why, do you love her? He told me no, he kissed her so now he has to marry her. WHAT?!?!?!? I asked him how this happened. He told me that first he kissed her on the cheek and then he kissed her on the lips. How is this starting already?
Last night he announced that she is his girlfriend. But he was really sheepish about it. I just hope he doesn't get his heart broken. Although, she did call to hang out with him last night as well (before the announcement) and Nathaniel declined the offer. He would rather play video games than hang out with his girlfriend. So typical of a guy!!!!
Thursday, July 9, 2009
Penelope the Terror
Penny: "DA DA DA DA DA . . . .DA DA DA. .. DADADA. . . DA DA DA DAD DDADDDAAA"
Me: "No, MAMA, MAMA, MAMA."
Penny, with her cute look and hands gesticulating like she is giving a disseration: "DA DADADADAD DAD ADAD DADADADA DADAD DA, AHHHHHHH"
Penny ambled over to her brother and seemingly began to hug him saying, "AAAAWWW." Then she commenced to viciously slap him repeatly in the face. Usually Nathaniel is very patient, but tonight, he seemed intent to enjoy the video game time he had earned. He turned around and yelled at Penny, telling her to stop hurting him and to go away. It only took a few seconds for the hurt to build in her face. She clenched up her face and burst into tears. Then she looked up to see me sitting there across the room. She ran over to me all the while crying and waving her hands wildly in the air. I felt like she was saying "Mommy, how dare Nathaniel talk to me like that!!! Make it all better with your kisses."
I kind of forgot what it was like to have someone come to you to be comforted. Even though she was sad, I loved every minute of the comforting.
Me: "No, MAMA, MAMA, MAMA."
Penny, with her cute look and hands gesticulating like she is giving a disseration: "DA DADADADAD DAD ADAD DADADADA DADAD DA, AHHHHHHH"
Penny ambled over to her brother and seemingly began to hug him saying, "AAAAWWW." Then she commenced to viciously slap him repeatly in the face. Usually Nathaniel is very patient, but tonight, he seemed intent to enjoy the video game time he had earned. He turned around and yelled at Penny, telling her to stop hurting him and to go away. It only took a few seconds for the hurt to build in her face. She clenched up her face and burst into tears. Then she looked up to see me sitting there across the room. She ran over to me all the while crying and waving her hands wildly in the air. I felt like she was saying "Mommy, how dare Nathaniel talk to me like that!!! Make it all better with your kisses."
I kind of forgot what it was like to have someone come to you to be comforted. Even though she was sad, I loved every minute of the comforting.
Sunday, July 5, 2009
Remembering 4th of Julys past
So my post is a day late. . . sue me.
Seven years ago yesterday I had approached my due date with Nathaniel. It was a very hot day, not like yesterday at all. I am pretty sure the temperature had reached 100 degrees. Having stopped working only 1 week prior as a waitress at TGI Fridays, I enjoyed lounging around at my parents house for a BBQ that day. Amazing that I cannot remember the 4th 3 years ago, but that day I remember all sorts of details. A good friend of mine, Kelly, stopped by with gifts from her mother and herself for the new baby that was to arrive. I was only 22 with all sorts of expectations of what motherhood was going to be like.
I tell his birth story to Nathaniel every day on his birthday, July 7. Has it really been 7 years already???
Two years ago yesterday I woke up early to get Nathaniel ready to go to CCMC. Penny had been re-admitted five days earlier for an infection to her open heart surgical incision. She hadn't responded to oral antibiotics, and we weren't sure what we were dealing with so, she was kept on the inside for a full course of IV anceph. I was bummed for obvious reasons, but also because we would have loved to spend the holidy with Scott's mother. (Of course we didn't know this was her last 4th of July.) Scott and I were hopeful that Penny was getting freed that day and we would have the rest of the day out of that place. Scott had slept over since we never left her in the hospital by herself. Nathaniel and I made our way through the short fifteen minute drive, and then spent an unusually quick 5 minutes to find a parking space. I pulled Nathaniel in one of the wagons since I was ready to take advantage of any fun thing for Nathaniel. In the lobby in front of the main elevators they had two tables with volunteers making party hats. It was such a neat thing for Nathaniel (almost five) to do. I was so grateful for that, I mean, how nice is it that they do this for families on a holiday. We finally made it upstairs and I learned that Penny was indeed going to be discharged that afternoon!!!!
Tonight, Nathaniel is at the Manchester fireworks with Scott. I got a call at 8 pm that Nathaniel had fallen asleep at 7:30 or so. What a tired maniac!!! Poopers finally crashed at 9 pm tonight after I worked her hard at the playscape down the street. This girl can crawl up the stairs and slide head first down the short slide. What a nut!! Then we had girls night out at Friendly's. We tried out a booster seat for the first time, instead of the high chair. She was wonderful! So engaged with her meal and her momma. We conversed most of the eveing about Dada, but sometimes we talked about the light, and sometimes we discussed the baby in the booth near us.
I hope everyone esle is having a great holiday weekend.
Seven years ago yesterday I had approached my due date with Nathaniel. It was a very hot day, not like yesterday at all. I am pretty sure the temperature had reached 100 degrees. Having stopped working only 1 week prior as a waitress at TGI Fridays, I enjoyed lounging around at my parents house for a BBQ that day. Amazing that I cannot remember the 4th 3 years ago, but that day I remember all sorts of details. A good friend of mine, Kelly, stopped by with gifts from her mother and herself for the new baby that was to arrive. I was only 22 with all sorts of expectations of what motherhood was going to be like.
I tell his birth story to Nathaniel every day on his birthday, July 7. Has it really been 7 years already???
Two years ago yesterday I woke up early to get Nathaniel ready to go to CCMC. Penny had been re-admitted five days earlier for an infection to her open heart surgical incision. She hadn't responded to oral antibiotics, and we weren't sure what we were dealing with so, she was kept on the inside for a full course of IV anceph. I was bummed for obvious reasons, but also because we would have loved to spend the holidy with Scott's mother. (Of course we didn't know this was her last 4th of July.) Scott and I were hopeful that Penny was getting freed that day and we would have the rest of the day out of that place. Scott had slept over since we never left her in the hospital by herself. Nathaniel and I made our way through the short fifteen minute drive, and then spent an unusually quick 5 minutes to find a parking space. I pulled Nathaniel in one of the wagons since I was ready to take advantage of any fun thing for Nathaniel. In the lobby in front of the main elevators they had two tables with volunteers making party hats. It was such a neat thing for Nathaniel (almost five) to do. I was so grateful for that, I mean, how nice is it that they do this for families on a holiday. We finally made it upstairs and I learned that Penny was indeed going to be discharged that afternoon!!!!
Tonight, Nathaniel is at the Manchester fireworks with Scott. I got a call at 8 pm that Nathaniel had fallen asleep at 7:30 or so. What a tired maniac!!! Poopers finally crashed at 9 pm tonight after I worked her hard at the playscape down the street. This girl can crawl up the stairs and slide head first down the short slide. What a nut!! Then we had girls night out at Friendly's. We tried out a booster seat for the first time, instead of the high chair. She was wonderful! So engaged with her meal and her momma. We conversed most of the eveing about Dada, but sometimes we talked about the light, and sometimes we discussed the baby in the booth near us.
I hope everyone esle is having a great holiday weekend.
Tuesday, May 26, 2009
Has anyone else done this?
Information on PECS (picture exchange communication system)
"The Picture Exchange Communication System (PECS) is an augmentative communication system developed to help individuals quickly acquire a functional means of communication (Bondy and Frost, 1994). PECS is appropriate for individuals who do not use speech or who may speak with limited effectiveness: those who have articulation or motor planning difficulties, limited communicative partners, lack of initiative in communication, etc."
My good friend Audrey, is employed at a school that utilizes this system. She is very enthusiastic about it and gave me a bunch of resources for me to learn about this program. Audrey mostly works with autistic children and PECS seems to be helpful in her experience. The last time our ST came out she introduced us to this as well. There hasn't been enough studies to show if this encourages or inhibits verbal communication, but for those that are verbally delayed, any alternative method to communicate has to be good. I can't even imagine how frustrating it is not to be able to communicate my needs and wants.
Basically, you have this board with Velcro and you stick pictures of people or things or ideas (like "want") and the child will come over to the board, grab a picture to exchange it for the real thing. The transfer has to be immediate, almost overlapping, to ensure that the association is strong. Sarah (Penny's ST and Marni (her sped) were both very impressed at how quickly Penny got the idea of this method. . . and her strength to rip that picture off the Velcro. That was pretty tough. And Penelope didn't even tire of these exercises for a good 30 minutes. I think that the B23 office is making her a board of her own. Hopefully, we will have the time and energy to be consistent with this sort of thing. As of now, Penny knows to walk over to our pantry cabinet, stand at the door, point and wine until she gets a snack. How cool would it be if she exchanged a picture for her graham cracker?
If anyone Else has any experience with PECS I would be interested to hear about it. Thank you.
"The Picture Exchange Communication System (PECS) is an augmentative communication system developed to help individuals quickly acquire a functional means of communication (Bondy and Frost, 1994). PECS is appropriate for individuals who do not use speech or who may speak with limited effectiveness: those who have articulation or motor planning difficulties, limited communicative partners, lack of initiative in communication, etc."
My good friend Audrey, is employed at a school that utilizes this system. She is very enthusiastic about it and gave me a bunch of resources for me to learn about this program. Audrey mostly works with autistic children and PECS seems to be helpful in her experience. The last time our ST came out she introduced us to this as well. There hasn't been enough studies to show if this encourages or inhibits verbal communication, but for those that are verbally delayed, any alternative method to communicate has to be good. I can't even imagine how frustrating it is not to be able to communicate my needs and wants.
Basically, you have this board with Velcro and you stick pictures of people or things or ideas (like "want") and the child will come over to the board, grab a picture to exchange it for the real thing. The transfer has to be immediate, almost overlapping, to ensure that the association is strong. Sarah (Penny's ST and Marni (her sped) were both very impressed at how quickly Penny got the idea of this method. . . and her strength to rip that picture off the Velcro. That was pretty tough. And Penelope didn't even tire of these exercises for a good 30 minutes. I think that the B23 office is making her a board of her own. Hopefully, we will have the time and energy to be consistent with this sort of thing. As of now, Penny knows to walk over to our pantry cabinet, stand at the door, point and wine until she gets a snack. How cool would it be if she exchanged a picture for her graham cracker?
If anyone Else has any experience with PECS I would be interested to hear about it. Thank you.
Sunday, May 24, 2009
SHE'S BAAAAACK!!
How did a whole month go by?!!??? That is truely insane to me. I guess I have been too busy at work to slack off and keep up with my blog :)
Penny is the most wonderful child in the world. Every day I think about how remarkable she is. (Well, ok, maybe not last weekend when she cried from 9p to 3a straight and then was up again to greet the day at 6a on Sunday ready to go!! Turned out she had an ear infection.) It is just so neat to see the progression it takes for her to learn how to walk. Just 2 weeks ago she would take 5 to 9 steps or so, fall and then crawl the rest of the way. Last week, she was still at the 5 to 9 step maximum, but when she fell, she would stand right back up and walk another 5 steps, fall, then get right back up and walk some more. SO EXCITING!! This weekend, she goes for it all the time walking 10 steps is the norm; she can just about transverse our living room without taking a digger.
Yesterday we went to Bushnell Park in Hartford, there is a carousel from 1914 that is actually quite fast. Penny and Nathaniel really enjoyed themselves at the park. In between rides, they played right outside the carousel building where there is a decent sized playscape on a spongy material. Penny enjoyed the slides; she is so daring, she wanted to go down head first all the time. This girl is crazy!!
Right now, I am watching her feed herself little pineapple tidbits from a dole fruitcup. She has her little fork, and she makes these cute stabby motions at the food. She fishes until something finally sticks. Then she generally holds the fork up to marvel at her accomplishment with an "AHHHH-OHHHHH," and then proceeds to eat.
Still not too much progress with the verbal communication, although it is clear she completely comprehends just about everything I say to her. I talk to her like she is a typical 2 year old, as I have learned not to underestimate her in that department. She uses about a dozen signs regularly. The words that she can say all start with "D" such as dada, down, duck, dog, and done. Pretty much all small mamals are "Dogs" although she can discrimate when she puts her mind to it. She can sign "cat" and uses it when she sees one in a book, but in person she will either say, "dog" or make a very pronounced hard "c" sound. In any event, her eys get so big and wide they look like they will pop right out of her head. She is so dang cute.
She is content to play with her blocks for an hour at a time, even by herself while I get things done, but of course she prefers company as any child would.
My heart melts each time she kisses me. Basically this is a wide mouth contact on my cheek. But I can tell she is proud of herself too, because these kisses are given on command, and again, she is able to demonstrate that she understands me, and that is a cool thing.
So where have I been? Well, working 40 hours a week as usual. Monday night is libray night for me and Nathaniel. Tuesdays I do have off, so no excuses there. Wednesday night is soccer practice for Nathaniel, Thursdays was swim lessons: I had parent and child swim class with Penny and Nathaniel had his level 2 class at the same place and in the same time slot. I was very excited about it, but Penny was sick and missed the first 2 or 3 classes. Then we went to a class, but the following 2 weeks were canceled. They had closed and drained the pool to change the filter. The very first class after that was the first day water had been added to the water and it was FRIGID!! Penny lasted all of five minutes before she was a purple baby. Of course being of concern for her heart defect, I didn't push the matter. The last class was supposed to be last week, I think, but we kind of dropped out of it. We will pick it back up with fall classes. Friday nights were cub scouts, as I am the den leader for this fine group of boys. 5/15 was our last official meeting, although there will be plenty of activities through the summer. Our Saturdays and Sundays have been filed with various playdates and museum visits. I will have to tell you about our visit to Boston on another post.
Anyway, I just wanted to finally check in with you people. I have pletny of video of Penelope walking, but I just need to get in on the pc. Oh, yeah, SHE IS TURNING 2 ON FRIDAY! I can't believe my baby is turning 2.
I hope everyone has a fun and safe memorial day!
Penny is the most wonderful child in the world. Every day I think about how remarkable she is. (Well, ok, maybe not last weekend when she cried from 9p to 3a straight and then was up again to greet the day at 6a on Sunday ready to go!! Turned out she had an ear infection.) It is just so neat to see the progression it takes for her to learn how to walk. Just 2 weeks ago she would take 5 to 9 steps or so, fall and then crawl the rest of the way. Last week, she was still at the 5 to 9 step maximum, but when she fell, she would stand right back up and walk another 5 steps, fall, then get right back up and walk some more. SO EXCITING!! This weekend, she goes for it all the time walking 10 steps is the norm; she can just about transverse our living room without taking a digger.
Yesterday we went to Bushnell Park in Hartford, there is a carousel from 1914 that is actually quite fast. Penny and Nathaniel really enjoyed themselves at the park. In between rides, they played right outside the carousel building where there is a decent sized playscape on a spongy material. Penny enjoyed the slides; she is so daring, she wanted to go down head first all the time. This girl is crazy!!
Right now, I am watching her feed herself little pineapple tidbits from a dole fruitcup. She has her little fork, and she makes these cute stabby motions at the food. She fishes until something finally sticks. Then she generally holds the fork up to marvel at her accomplishment with an "AHHHH-OHHHHH," and then proceeds to eat.
Still not too much progress with the verbal communication, although it is clear she completely comprehends just about everything I say to her. I talk to her like she is a typical 2 year old, as I have learned not to underestimate her in that department. She uses about a dozen signs regularly. The words that she can say all start with "D" such as dada, down, duck, dog, and done. Pretty much all small mamals are "Dogs" although she can discrimate when she puts her mind to it. She can sign "cat" and uses it when she sees one in a book, but in person she will either say, "dog" or make a very pronounced hard "c" sound. In any event, her eys get so big and wide they look like they will pop right out of her head. She is so dang cute.
She is content to play with her blocks for an hour at a time, even by herself while I get things done, but of course she prefers company as any child would.
My heart melts each time she kisses me. Basically this is a wide mouth contact on my cheek. But I can tell she is proud of herself too, because these kisses are given on command, and again, she is able to demonstrate that she understands me, and that is a cool thing.
So where have I been? Well, working 40 hours a week as usual. Monday night is libray night for me and Nathaniel. Tuesdays I do have off, so no excuses there. Wednesday night is soccer practice for Nathaniel, Thursdays was swim lessons: I had parent and child swim class with Penny and Nathaniel had his level 2 class at the same place and in the same time slot. I was very excited about it, but Penny was sick and missed the first 2 or 3 classes. Then we went to a class, but the following 2 weeks were canceled. They had closed and drained the pool to change the filter. The very first class after that was the first day water had been added to the water and it was FRIGID!! Penny lasted all of five minutes before she was a purple baby. Of course being of concern for her heart defect, I didn't push the matter. The last class was supposed to be last week, I think, but we kind of dropped out of it. We will pick it back up with fall classes. Friday nights were cub scouts, as I am the den leader for this fine group of boys. 5/15 was our last official meeting, although there will be plenty of activities through the summer. Our Saturdays and Sundays have been filed with various playdates and museum visits. I will have to tell you about our visit to Boston on another post.
Anyway, I just wanted to finally check in with you people. I have pletny of video of Penelope walking, but I just need to get in on the pc. Oh, yeah, SHE IS TURNING 2 ON FRIDAY! I can't believe my baby is turning 2.
I hope everyone has a fun and safe memorial day!
Monday, April 13, 2009
Baby Steps
First off, I hope everyone had a lovely Easter. Ours was really wonderful. I had Scott's sister Wendy over with her husband and their grand daughter Aarylin.
Penny is just so close to walking and I am so excited!! I don't remember this whole process with Nathaniel, probably because it was so quick - no time to enjoy it. Penny has been standing up in the middle of the room countless times a day and more often then not, she will take one little hop-like step. She then shakes her hands with excitement and pride, then falls. It is so adorable. Sometimes she takes 2 steps. Today after her nap, I walked her one-handed from her bedroom to my bedroom and then 2 steps away from my bed I let go. She took the two steps to the bed so she could get closer to her daddy. Yesterday morning, she took 5 steps from the dinner table toward me. I just love her so much!!
Her 2nd birthday is coming up next month and I really want to have a super birthday for her. She had been through so much and I am really looking forward to celebrate the anniversary of her birth. I just can't think of the perfect idea yet. Anyone who wants to come to the Hartford area and celebrate Penny's birthday with me shoot me an e-mail. It will be on May 30. Again, just not sure what the festivities will be yet.
Penny is just so close to walking and I am so excited!! I don't remember this whole process with Nathaniel, probably because it was so quick - no time to enjoy it. Penny has been standing up in the middle of the room countless times a day and more often then not, she will take one little hop-like step. She then shakes her hands with excitement and pride, then falls. It is so adorable. Sometimes she takes 2 steps. Today after her nap, I walked her one-handed from her bedroom to my bedroom and then 2 steps away from my bed I let go. She took the two steps to the bed so she could get closer to her daddy. Yesterday morning, she took 5 steps from the dinner table toward me. I just love her so much!!
Her 2nd birthday is coming up next month and I really want to have a super birthday for her. She had been through so much and I am really looking forward to celebrate the anniversary of her birth. I just can't think of the perfect idea yet. Anyone who wants to come to the Hartford area and celebrate Penny's birthday with me shoot me an e-mail. It will be on May 30. Again, just not sure what the festivities will be yet.
Sunday, March 1, 2009
Can you believe that it is March already
Gees, wasn't Christmas, like, a few weeks ago? Between running around to complete tasks for Nathaniel's Cubscout Den, working full-time, Penelope's appointments, Scott becoming ill, play dates for the children, and of course making time for myself, this year is already flying by. Pretty soon I will be looking forward to the Easter bunny. I do hope Penny will understand a little more about Easter bunnies this year than last.
Mostly, I am not that frustrated by her self-paced development. But I have to be honest and admit that there are those things that I miss. She is 21 months and she has not uttered "mama" or even attempted to sign it. She uses about four signs routinely now, why can't mama be one of them if she cannot form the sounds with her mouth? And don't get me wrong, she is doing wonderfully and I am very proud of where she is today. But I still wish she would say my name!!!!
Today I took her to the Lutz Museum, a children's museum in Manchester, CT that I have loved since I was a child. How proud I was when Penny initiated one-handed walking throughout the museum. How dare I cramp her style by making her unable to point at the things she wanted as she ambled over!!? She was such an adorable cutie-pie strutting her stuff all throughout the museum while I followed. I know that she is mostly crawling as she investigates the exhibits, but as I keep telling her, "If you want to check those out so badly, you can figure out how to walk on your own!" Does this display of encouragement border neglect? Her glares back at me paint the picture that she knows my opinion on the matter, but she remains steady on her course to complete these achievements on her own time. And what else can a mother expect, or accept?
Mostly, I am not that frustrated by her self-paced development. But I have to be honest and admit that there are those things that I miss. She is 21 months and she has not uttered "mama" or even attempted to sign it. She uses about four signs routinely now, why can't mama be one of them if she cannot form the sounds with her mouth? And don't get me wrong, she is doing wonderfully and I am very proud of where she is today. But I still wish she would say my name!!!!
Today I took her to the Lutz Museum, a children's museum in Manchester, CT that I have loved since I was a child. How proud I was when Penny initiated one-handed walking throughout the museum. How dare I cramp her style by making her unable to point at the things she wanted as she ambled over!!? She was such an adorable cutie-pie strutting her stuff all throughout the museum while I followed. I know that she is mostly crawling as she investigates the exhibits, but as I keep telling her, "If you want to check those out so badly, you can figure out how to walk on your own!" Does this display of encouragement border neglect? Her glares back at me paint the picture that she knows my opinion on the matter, but she remains steady on her course to complete these achievements on her own time. And what else can a mother expect, or accept?
Monday, February 2, 2009
Go Therapy Go!
Speech therapies, physical therapies, occupational therapies, big therapies, little therapies, long therapies, and short therapies!
Penelope has been receiving services through the East Hartford Birth to Three since she was was 6 weeks old. I remember those first few months, my heart and my head pulled in so many different directions with this beautiful new life. I had my 5 year old to worry about, the pumping and the trying to nurse routine (is there anything more frustrating than feeding your child?), twice weekly visiting nurse pulse-ox checks (Hi Meghan I am so glad we met!!), once a week visits to the pediatrician, and not to mention the round the clock medications she was on after her heart surgery. Somewhere we managed to squeeze in those early visits from our special ed teacher and our service coordinator, Marni from Bto3. Quickly, we added the phyisical therapy visits as well. I remember when the PT on the hospital staff stopped in to see Penny before she left the hospital for the first time and she mentioned that the average age for a child with Down syndrome to begin to walk was 2 years old. For some reason I was really blown away by that. As I looked down to the bed at that floppy little 7 lb baby, only 7 days out of surgery, I thought to myself, "Wow! How do I know if I am up to this challenge? I will have to work with her and push her so much just do accomplish something so basic as walking?" I will never really know if that physical therapist noticed the water welling up in my eyes for probably the, oh, fiftieth time in those past thirteen days, but she put her hand out and said firmly, "But she will walk." And I believed her. . .
In the past eighteen months we have seen our Birth to 3 physical therapist, Dr. Yvette, regularly about two times a month. If we really wanted to we could augment that to once a week, but as any one who knows Penny will attest, she is doing just fine with the status quo. It took Penelope a bit to learn how to sit up on her own. If someone came by and sat her up, she could stay there on her own for awhile by the time she was ten months old; the really neat trick came at about fourteen months when she was able to put her self in the sitting position. By this time she had also perfected her military crawl and would demonstrate this by transversing our downstairs floor plan on her belly in under 90 seconds time. This school year has gone by so fast it is tough to say when she finally crawled on her hands and knees full time, but I would guess that came around Halloween time. Now we are on to more challenging exercises to entice little Miss Penny pants to walk.
And through all of these incredible milestones, Dr. Yvette has been there to give support to not just Penny but the whole family. After she leaves, I sometimes wonder who benefits more from the visit, myself or Penelope. We are so blessed to have such a warm-hearted, intelligent person on our team, who truly wants to be here to support Penny and her family. We often talk about what I want out of life; and she listens to me! Dr. Yvette always gives wonderful advice on things we can do with and for Penny, but she gives it with such neutrality that it never seems dictated or scripted, but absolutely from the heart, what she knows to be right for our family. We are about half-way through our services with Bto3 and already I am looking to the time when Dr. Yvette will no longer be Penelope's instructor. Thankfully, I know that we will be able to continue a relationship with her, otherwise, I would really be dreading Penny's third Birthday. During our last visit on Friday, Dr. Yvette worked with Penny to help her walk while she was only holding onto one hand and we also worked on her climbing skills to get up and down off the big chair. And then she worked on my esteem skills to get me up and off my ass to look for something more fulfulling then to continue looking for something else within Enterprise. We talked a lot about me going back to school to get a Masters of Education. I always kind of steered toward becoming a high school mathematics teacher, and now I want to do this more than ever! If only everyone had a Dr. Yvette for their household!
Penelope has been receiving services through the East Hartford Birth to Three since she was was 6 weeks old. I remember those first few months, my heart and my head pulled in so many different directions with this beautiful new life. I had my 5 year old to worry about, the pumping and the trying to nurse routine (is there anything more frustrating than feeding your child?), twice weekly visiting nurse pulse-ox checks (Hi Meghan I am so glad we met!!), once a week visits to the pediatrician, and not to mention the round the clock medications she was on after her heart surgery. Somewhere we managed to squeeze in those early visits from our special ed teacher and our service coordinator, Marni from Bto3. Quickly, we added the phyisical therapy visits as well. I remember when the PT on the hospital staff stopped in to see Penny before she left the hospital for the first time and she mentioned that the average age for a child with Down syndrome to begin to walk was 2 years old. For some reason I was really blown away by that. As I looked down to the bed at that floppy little 7 lb baby, only 7 days out of surgery, I thought to myself, "Wow! How do I know if I am up to this challenge? I will have to work with her and push her so much just do accomplish something so basic as walking?" I will never really know if that physical therapist noticed the water welling up in my eyes for probably the, oh, fiftieth time in those past thirteen days, but she put her hand out and said firmly, "But she will walk." And I believed her. . .
In the past eighteen months we have seen our Birth to 3 physical therapist, Dr. Yvette, regularly about two times a month. If we really wanted to we could augment that to once a week, but as any one who knows Penny will attest, she is doing just fine with the status quo. It took Penelope a bit to learn how to sit up on her own. If someone came by and sat her up, she could stay there on her own for awhile by the time she was ten months old; the really neat trick came at about fourteen months when she was able to put her self in the sitting position. By this time she had also perfected her military crawl and would demonstrate this by transversing our downstairs floor plan on her belly in under 90 seconds time. This school year has gone by so fast it is tough to say when she finally crawled on her hands and knees full time, but I would guess that came around Halloween time. Now we are on to more challenging exercises to entice little Miss Penny pants to walk.
And through all of these incredible milestones, Dr. Yvette has been there to give support to not just Penny but the whole family. After she leaves, I sometimes wonder who benefits more from the visit, myself or Penelope. We are so blessed to have such a warm-hearted, intelligent person on our team, who truly wants to be here to support Penny and her family. We often talk about what I want out of life; and she listens to me! Dr. Yvette always gives wonderful advice on things we can do with and for Penny, but she gives it with such neutrality that it never seems dictated or scripted, but absolutely from the heart, what she knows to be right for our family. We are about half-way through our services with Bto3 and already I am looking to the time when Dr. Yvette will no longer be Penelope's instructor. Thankfully, I know that we will be able to continue a relationship with her, otherwise, I would really be dreading Penny's third Birthday. During our last visit on Friday, Dr. Yvette worked with Penny to help her walk while she was only holding onto one hand and we also worked on her climbing skills to get up and down off the big chair. And then she worked on my esteem skills to get me up and off my ass to look for something more fulfulling then to continue looking for something else within Enterprise. We talked a lot about me going back to school to get a Masters of Education. I always kind of steered toward becoming a high school mathematics teacher, and now I want to do this more than ever! If only everyone had a Dr. Yvette for their household!
Tuesday, January 6, 2009
BRING IT!!
As I said in an earlier post, Scott got Sing Star Vol. 2 for his birthday. It is really so much fun, but then I am a huge kareokee fan. He downloaded some additional songs to the "library" and we battled each other in Duran Duran's "Ordinary World" We were almost tied. I was so happy with how well I did!!! Then we did the Darkess, you know that song with all the falcetto "I believe in a thing called love. . . just listen to the rythm of my heart . . . " I am pretty sure we both did pretty aweful with this song, but Scott still beat me. We gave Penny a microphone and we were hoping that she was going to start singing but she was only interested in eating the microphone and licking it. We did hear a lot of heavy breathing! lol. She started dancing when Scott began to sing "Uptown Girl" by Billy Joel.
Only a short few months ago, Penny would refuse to walk more then 5 or so steps while one of us held her hands. Now, she will do laps around the house with her walker and/or one of us holding onto her. She has this huge grin on her face and she is just so happy to be up and around. I can't wait for her to be walking on her own. She is going to be 20 months soon.
Only a short few months ago, Penny would refuse to walk more then 5 or so steps while one of us held her hands. Now, she will do laps around the house with her walker and/or one of us holding onto her. She has this huge grin on her face and she is just so happy to be up and around. I can't wait for her to be walking on her own. She is going to be 20 months soon.
Saturday, January 3, 2009
News from the homefront
So, Penny has been practicing really hard at walking. She must have put herself into a standing position from the inverted "v" at least a dozen times today. She also got a push toy for Christmas form her Aunt Wendy and she has been pushing it all around our house since yesterday morning. She is so stinking cute. Also, Penelope has been so miserable. I think that once a kid is about to take on a milestone they get really cranky, right? I swear she is sitting there frustrated as all hell that she can't just get up and go. As I sit here writing this, she is standing up with her back against the couch, using the couch for support. I think it is funny when she does this.
Nathaniel is just turning into such a little man. We were sitting down the other night, Scott, Nathaniel and myself, when he turned to me and said, "I think it is time for us to have another baby." He told me that he needs another baby sister. Well, I told im that as soon as he buys me house we can start trying! lol!! Although, Nathaniel has obviously been thinking this out, because he rebutted with the plan that we can put in the bunk bed below his loft, so that Penny can move in below him and the baby can sleep in Penny's crib. You can't blame a boy for trying, eh?
Nathaniel is just turning into such a little man. We were sitting down the other night, Scott, Nathaniel and myself, when he turned to me and said, "I think it is time for us to have another baby." He told me that he needs another baby sister. Well, I told im that as soon as he buys me house we can start trying! lol!! Although, Nathaniel has obviously been thinking this out, because he rebutted with the plan that we can put in the bunk bed below his loft, so that Penny can move in below him and the baby can sleep in Penny's crib. You can't blame a boy for trying, eh?
Thursday, December 11, 2008
Santa Claus is Coming to Town and other ramblings
I just love my little girl. She was so much fun tonight. She was laughing and pointing at things and yelling "DA" She ate her dinner with a fork, rigatoni with mock bololagnse sauce. I think she loved it! I just look in her beautiful eyes and I know she understands so much of what I have to say. When I came home from work, my babysitter asked me what a specific sign meant that Penny has been using. And she did what I know to be Penny's version of "more". This is when she puts her right index finger into her left palm, which is kind of curled. She was so impressed when I told her because Penny was using her sign appropriately to ask for more lunch!
We are going here on Saturday. I can't wait!
Oh, you should pop on by to Jessica's blog, she has a couple of wonderful stories for you.
Lastly, we had Nathaniel's conference today. It was not anywhere as bad as I was expecting. She did not imply at all that my son needs to be hung out by his toes. Even when he has recess taken away from him (which is everyday) she lets him run around for a few minutes to burn some energy. It sounds like his music teacher can't stand him, but she doesn't count, she only sees him once a week. We just need to work on our listening skills. . . .sigh, easier said then done, right?
We are going here on Saturday. I can't wait!
Oh, you should pop on by to Jessica's blog, she has a couple of wonderful stories for you.
Lastly, we had Nathaniel's conference today. It was not anywhere as bad as I was expecting. She did not imply at all that my son needs to be hung out by his toes. Even when he has recess taken away from him (which is everyday) she lets him run around for a few minutes to burn some energy. It sounds like his music teacher can't stand him, but she doesn't count, she only sees him once a week. We just need to work on our listening skills. . . .sigh, easier said then done, right?
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