A blog about my daughter growing up and facing the joys and challenges of growing up with Down syndrome and Tetralogy of Fallot while enjoying the love of a rough older brother. (Look how purple her feet were before her heart repair.)
Thursday, August 27, 2009
Nathaniel's Dreams are coming true
Monday, August 24, 2009
This couple will be matching
So, I was at Target (my favorite store) and saw this raincoat that I thought would be perfect for Penny's boyfriend, Dillon. Then I saw the matching hat and I was sold!! I then noticed the pink set and I knew I had to get this for Penny. Can you imagine how cute our kids are going to be. I am almost hoping for rain this year at the Buddy Walk so that they can be sporting their rain gear together!! ( I didn't bother with the umbrellas, we are talking about a 2 and a 3 year old) Oh, and I couldn't find the pic of the yellow matching hat online, but rest assured. Dillon got a hat too :)


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.
Friday, August 21, 2009
Wednesday, August 19, 2009
I am still a sucker for flattery
Yesterday, I had an awesome time with the kids at the beach at Camp Harkness. I was able to meet up with Holly and Sam as well as Laureen and Stephen. We really missed Melissa and Dillon but I know they wanted to be there. While there, I had a great encounter with an adult with Down syndrome. He was roughy fifty or so. I was outside of the bath house waiting for Nathaniel when he approached us and started talking to Penny, telling her how cute she was and such. He then looked up at me and asked me about her, what her name is and how old she is. So I told him of course. Then he began to talk to Penny again and while motioning up to me he said, "So, are you out having fun with your older sister?" I must admit I was confused at first and then when I realized he was referring to me, I did become a little flushed. I smiled so widely at this man and informed him that, "No, actually, I am her mother." He looked back up at me, then back to Penny, then back to me and said, "Nah, you look to young to be any one's mother!" I gushed again and thanked him for the compliment. He told me he was going off to swim then and we said our goodbyes. Imagine that!
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Monday, August 17, 2009
Wednesday, August 12, 2009
ENT follow up
Well, we were asked to wait for awhile, which is ok, I happen to have patience for this sort of thing. Penelope's ENT visit is scheduled for Oct. 12 at 9am. Hopefully I will be laid off by then, but if not, I will just take a morning off so that I can be with the ENT (ear, nose, and throat) doctor that morning.
Wish us luck!!
Wish us luck!!
Audiological Report
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!
Friday, August 7, 2009
Friday's Favorite Quote
I am going to start something new, at least, I think it is new. I love going on websites to find a good quote to get me smiling, thinking, or both. From now on I am going to share my favorite one on Friday!
"IT IS NOT GIVING CHILDREN MORE THAT SPOILS THEM; IT IS GIIVNG THEM MORE TO AVOID CONFRONTATION." - John Gray from Chilren Are From Heaven
"IT IS NOT GIVING CHILDREN MORE THAT SPOILS THEM; IT IS GIIVNG THEM MORE TO AVOID CONFRONTATION." - John Gray from Chilren Are From Heaven
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!
Mourning at St. Mary's
Monday, August 3, 2009
Saying good bye to our house
DSCF1963
Originally uploaded by maxiak
Sorry this is such an awful picture. We took this one in the morning before our departure and the sun was directly in our faces no matter which why we looked. :)
**Edit** Sorry Joanie! This is us leaving our vacation house that was in MT. We were sad to say goodbye
Back From Montana
Wednesday, July 29, 2009
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.
Tuesday, July 21, 2009
New Friend for Penny
On a brighter side, I think Penny met her new best friend. Up until now, Penny has met a lot of boy children with Down syndrome, and we were on the look out for a girl that is local to hang with. Well, we went and visited a family that lives about 15 minutes away. If the mom sends me her pix (again my camera was not operable) and her permission to post I will throw some pictures up soon. I know that this is a match made in heaven so to speak because her name is Helen. Both Penelope and Helen are strong Greek names that are rich in Greek mythology. In fact, the name Helen made it on my short list for that reason, but Penelope won out in the end.
Penelope was the wife of King Odysseus of Ithaca. Odysseus was pretty much forced to help the king of Sparta when his wife, Helen of Sparta was "kidnapped" by the prince of Troy. Thus began the Trojan war, ten year battle over a woman. Helen's beauty was unmatched and she was said to have had "the face that launched a thousand ships" because of all the countries involved in this fight. All the time that Odysseus was absent from home, twenty years in fact, Penelope never once took on another lover. She had many suitors since there was an empty thrown, but she turned down each one of them because Penelope believed her husband was to return. The name Penelope has two meanings; the first is "always faithful" but the name also has a more literal translation, "one who weaves." This is because it was said that during the time Penelope waited for the return of her husband, she was constantly weaving a garment to keep herself too busy for the suitors.
Penelope was the wife of King Odysseus of Ithaca. Odysseus was pretty much forced to help the king of Sparta when his wife, Helen of Sparta was "kidnapped" by the prince of Troy. Thus began the Trojan war, ten year battle over a woman. Helen's beauty was unmatched and she was said to have had "the face that launched a thousand ships" because of all the countries involved in this fight. All the time that Odysseus was absent from home, twenty years in fact, Penelope never once took on another lover. She had many suitors since there was an empty thrown, but she turned down each one of them because Penelope believed her husband was to return. The name Penelope has two meanings; the first is "always faithful" but the name also has a more literal translation, "one who weaves." This is because it was said that during the time Penelope waited for the return of her husband, she was constantly weaving a garment to keep herself too busy for the suitors.
Monday, July 20, 2009
So sad and other thoughts
We had Nathaniel's 3rd celebration for his 7th birthday on Saturday. It was a glorious laser tag party, sans Penny so that Scott and I could get in there with Nathaniel and tag him over and over. Well, I dropped the camera and it is broken. I can't even get my computer to read the card so I can't tell if that was damaged as well. I just emptied the photos recently so the only pictures are those that I took on Friday while making the cake with Nathaniel and Penelope. And then those pix taken on Saturday of course, but man, was that cake cool! Not to mention that we only had that camera for about a year and it was a couple hundred dollars. It makes me so sad. . . .
**update** Scott purchased the protection plan that will cover you if you damage your own camera so they are sending us a new one. YIPPEE!!!
**update** Scott purchased the protection plan that will cover you if you damage your own camera so they are sending us a new one. YIPPEE!!!
Thursday, July 16, 2009
Ramdon Thoughts
This is were I will be in 2 weeks! I cannot wait for my vacation to Montana. This will be Penelope's first trip on a plane. Nathaniel went out to California when he was 3 and still in diapers. He was so cute then. It is increasingly difficult for me to stay focused at work. I am not sure if it is because I am getting laid off soon and my work load is staring to taper off, or if it is because I need this vacation or what? If there is anything I have learned about myself is that I need a heavy workload to stay focused on anything. When the work amount is lessened, I don't feel that sense of urgency and then nothing gets done! When I look back on my college career, I could maintain the Dean's list when taking 5 or more classes, but whenever I decided to "take it easy" with 4 classes, I did awful.
Also had a couple of those moments where I questioned my ability to be a mother. Last night I took the kiddies to the town pool in East Hartford. It was our first trip in the wading pool because the last few times it was closed. (Don't get me started on that) I let Penny run/wade right into the water without holding her hand and . . . she. . . FELL. Face first right into the water! By the time I picked her up she was already gagging on water. I could hear her clearing her airway so I tried not to panic, but man, it was pretty scary. After that, I would not let go of her hand!
Then, after the pool session was over, I let the kids play in the play scape right outside. I parked myself on the bench to watch them enjoy the summer evening. Penny seemed to find something interesting since I saw her bringing an object up to her gaping mouth. I got up as quickly as I could and yelled, "No Penny! That is yucky!!" Alas, she is fast when it comes to food. What I found in her hand was a cream sandwich cookie with her little teeth marks in it. IT WAS TEAMING WITH ANTS!! They began to crawl from the cookie in her hand up her arm. I slapped the cookie out of her hand and swatted the ants off her chubby arm. As I brushed cookie crumbs of her face several seconds later, a live ant crawled out of her mouth!! GROSS!!! Several minutes after that, her tongue ejected a dead ant from her mouth too.
My only hope is that ants are a laxative and this traumatizing experience will help out her constipation issues. lol.
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