Hi All,
No I didn't take a short haidas from blogging. I have been busy. First let me tell you that I hated how my blog looked. I really did. I have changed it several times and I still am not crazy about how it looks. I have seen so many really professional looking blogs out there and I am very jealous. So, I went back to square one and tried to redo mine over again. So, again I am not totally satisfied but I guess it will do for now.
On the homefront...We were all sick this past week. Some funky sinus, ear infection, cold thing going around. It knocked me out for a few days. Gwynny had been sick for over a week so I took her to the doctor on Wednesday only to find out that she had an ear infection. Good and Bad...Good because we now know part of why she was coughing so much. Bad...because she has to take an antibiotic, and she has to be on Claritin for a month to help with the cough thing she has and if it doesn't improve we will have to look into other options. Thank the Lord, Lily is ok. I took her to the doctor on Friday even though she only had the cough a couple of days prior. I am always paranoid when it comes to her. I went on Friday as well and found out I have a sinus infection. Bill as usual dodged a bullet and just had a bit of a cold for a couple of days. Lucky guy! So life was slowed down just a bit at times this past week.
Gwynny...starts preschool Tuesday...YEAH!, YEAH!, YEAH!, ahummm...did I do that? LOL! We had orientation this past Tuesday evening and I can tell she is really going to enjoy it. She was obsessed with these dress-up clothes they had there and of course one of the outfits was a Princess Jasmine costume and she can't wait to get into that thing! That is all she talked about the next day. I think we are about ready for the big first day. Got some new shoes Friday at the mall and she got lots of new clothes with her birthday money so she should be good to go. It's amazing how many things kids need and I am told it only gets more expensive once they actually go to regular school. Woo Hoo! So much to look forward to. I'll post pictures after Tuesday of her big day.
About Lily...well we went back to the opthomologist this past week to get her eyes rechecked. If you all remember she was diagnosed as being near-sighted. Well, after waiting around for about 45 minutes for her eyes to dilate the doctor confirmed that she definitely needs glasses NOW! He feels that it would not be fair to her development if she was not able to see things clearly beyond about a foot. I agree. So, we begin the search for frames and lenses for our baby girl. I know that I definitely want her to get these frames called Specs4Us because they were designed especially for children with Ds. A woman here in the Cleveland area actually designed them because she saw a need for them based on her own daughter's issues who has Ds. Here is a link to the website in case anyone is interested. http://www.specs4us.com/ The link you want to click once you get there is on the left and it's called "Erin's World". Check it out. My biggest problem right now is coming up with the money for all this. Will have to pray and trust that the Lord will take care of it. Everything else with her is about the same. Still plugging away with OT and PT, oh and we did add Speech on this past week as well. Speech therapist sounds pretty good so we will see how that pans out.
Well, it's late and Gwynny has been up at least 4 times telling me she doesn't want to sleep. Too afraid she might miss something I guess. Lily's IFSP meeting is in the morning and we have a busy week ahead of us. Hopefully, I will have some time to check in here and put my thoughts down on paper, so to speak. Till later... God Bless You and hope everyone has a blessed week!
Sunday, August 30, 2009
Thursday, August 20, 2009
Gwynny said...
Thinking about kids and the funny things that they say reminded me of something else Gwynny said the other day that cracked me up. Sitting at Bob Evans having dinner Sunday after the fair and she looks at me very serious and says...
Gwynny: Mommy, you know, I love your husband!
Me: Laughing like crazy I say back to her...Gwynny, you know, I love your Daddy!
We all are now laughing hysterically! LOL!
Gwynny: Mommy, you know, I love your husband!
Me: Laughing like crazy I say back to her...Gwynny, you know, I love your Daddy!
We all are now laughing hysterically! LOL!
Wednesday, August 19, 2009
A Conversation with Gwynny
Today we went to the pool. It was a bit overcast outside, with temps in the mid 80's. Gwynny kicked off her shoes as usual and went barreling full steam ahead for the swimming pool. Much to her surprise the water temperature was a bit on the chilly side today. She quickly got out and came galloping back to the chair where I was sitting. Our conversation went something like this...
Me: How come you're not in the pool?
Gwynny: Because it's too cold for me.
Me: Too cold? Oh, well if you don't want to swim then maybe we should go home.
Gwynny: Ignoring the last part of what I had just said she replies: The water is too cold for me today and I can't walk on water.
Me: Walk on water?
Gwynny: Yeah, I can't walk on water like Jesus can.
End of story. LOL!
Me: How come you're not in the pool?
Gwynny: Because it's too cold for me.
Me: Too cold? Oh, well if you don't want to swim then maybe we should go home.
Gwynny: Ignoring the last part of what I had just said she replies: The water is too cold for me today and I can't walk on water.
Me: Walk on water?
Gwynny: Yeah, I can't walk on water like Jesus can.
End of story. LOL!
Saturday, August 15, 2009
The frosting on the cake with a cherry on top!
Hello Blogging World! Sorry I have been gone for awhile but part of the reason is that our cable modem decided to catch on fire last week and so we had no Internet service for several days. Don't worry, nothing bad became of it such as the place burning down, we just didn't have any Internet for awhile. Well, now we are back up and running and I have so much to catch people up on.
Let's see...let me go back to Friday the 7th at Mc'Donalds. The kids party went well. Kids had a good time, food was good, and cake was actually really good for Mc'ODonalds as Gwynny calls it. We also got an added bonus of a discount on the party since they didn't have enough curly straws for all the kids and one of the children was a bit upset about it. We asked the hostess if she had any more but to our dismay she did not. We asked her to talk to her manager and that led to the manager coming in and asking us if he could help us. Too funny! After we told him about the lack of curly straws he offered to give us a discount on the party! WooHoo! Every little bit helps these days!
Friday the 7th was bittersweet. It was Gwynny's birthday and she turned 4! Can't believe it! The party was great and everyone had a good time but the crumby thing that happened earlier that day was that my uncle passed away. He was supposed to come with my aunt and cousin to Gwynny's family party on Saturday. It was so sad just thinking that they wouldn't be able to make it to the party on Saturday. He was such a caring and loving man. He and my aunt, also my cousin have given my kids so much over the years and they were a HUGE help when Lily was in the hospital. I soooo much appreciate all that he did for us! He was a great man, full of compassion and he definitely will be missed. Uncle Steve you will be missed!
Saturday was the family party which was a bit smaller but Gwynny still had a great time! My brother, his wife and two kids came over and we had Tacos, one of Gwynny's favorites! I ordered her a Princess ice cream cake from Dairy Queen and she was crazy about it! She is completely into the Disney princesses so I hope we get to go to Disney World this winter as we are planning.
Last week was hectic as usual. Liliana finally, yes finally got her g-tube changed over to a button on Tuesday the 11th! What a difference! So much easier. No more taping the ends, very little leaking! I am a happy camper! The only thing they wouldn't take off was the granulation tissue that has grown around the hole. Dr. says she couldn't do it at that time due to possible infection. So we will have to wait to have that removed at her next appointment on the 28th. Overall, it went very smoothly and Lily came out of it much better than previous times. Hallelujah!
OT and PT for Lily are about the same. Still struggling with getting Lily to eat by mouth. It seems like the minute I miss feeding her by mouth she just goes right back to square one and forgets everything that we worked on. Her head seems to be getting stronger and she can sit up with minimal support but not on her own yet. We continue to work on this skill. She also hates to be on her stomach. I am hoping that now that she has the button that she will be more willing to lay on her tummy. Every time the PT puts her on her stomach she just has a fit! Oh well, we will continue to try. She is up for a review of her IFSP but there really isn't much to change on it. I hate those things anyways because Lily is Lily and she will master these skills when she is ready and willing to. That meeting is scheduled for the 31st.
On another note, my dad is starting to show signs of improvement. He was finally taken off the ventilator today and has been breathing on his own fine since earlier today. He will continue to stay in the ICU until they feel that he is more than ready to move on. He still has to have a swallow study done to find out why he aspirated which led to the pneumonia. Not sure where all this will lead us but worst case scenario he may have to have a g-tube like Lily for feeding if his Parkinson's disease has progressed to the point that he is unable to swallow his food correctly anymore. I really think though that he may just need some modifications for eating and he may be ok. He continues to be in my prayers and is on the prayer list at my church. He is a fighter and I feel like the Lord has already done a work in his life.
Summer seems to be flying by so quickly. We have spent many days at the pool and thoroughly enjoyed it. I think Gwynny and I will cry on September 7th the last day it will be open because we both love going there so much. Well, with the pool soon closing it just brings me to the beginning of a whole new avenue for Gwynny. She will be starting preschool on September 1st! I don't know who is more excited me or her! We went up to the school last week and got her registered. She will be going 5 days a week! I know it seems like a lot but with everything that has gone on with Lily it will definitely be good for her to have her own little part of her life that is special! We have an orientation for that next Tuesday night. I also need to go school shopping for her. Man, how time flies!
Well, as I said in the title this is the frosting on the cake with a cherry on top because that is exactly how life felt last week. Hoping for a better week this week and so far I am pleased. If I forgot anything I will try to post again later this week. Till next time...have a great week!
Let's see...let me go back to Friday the 7th at Mc'Donalds. The kids party went well. Kids had a good time, food was good, and cake was actually really good for Mc'ODonalds as Gwynny calls it. We also got an added bonus of a discount on the party since they didn't have enough curly straws for all the kids and one of the children was a bit upset about it. We asked the hostess if she had any more but to our dismay she did not. We asked her to talk to her manager and that led to the manager coming in and asking us if he could help us. Too funny! After we told him about the lack of curly straws he offered to give us a discount on the party! WooHoo! Every little bit helps these days!
Friday the 7th was bittersweet. It was Gwynny's birthday and she turned 4! Can't believe it! The party was great and everyone had a good time but the crumby thing that happened earlier that day was that my uncle passed away. He was supposed to come with my aunt and cousin to Gwynny's family party on Saturday. It was so sad just thinking that they wouldn't be able to make it to the party on Saturday. He was such a caring and loving man. He and my aunt, also my cousin have given my kids so much over the years and they were a HUGE help when Lily was in the hospital. I soooo much appreciate all that he did for us! He was a great man, full of compassion and he definitely will be missed. Uncle Steve you will be missed!
Saturday was the family party which was a bit smaller but Gwynny still had a great time! My brother, his wife and two kids came over and we had Tacos, one of Gwynny's favorites! I ordered her a Princess ice cream cake from Dairy Queen and she was crazy about it! She is completely into the Disney princesses so I hope we get to go to Disney World this winter as we are planning.
Last week was hectic as usual. Liliana finally, yes finally got her g-tube changed over to a button on Tuesday the 11th! What a difference! So much easier. No more taping the ends, very little leaking! I am a happy camper! The only thing they wouldn't take off was the granulation tissue that has grown around the hole. Dr. says she couldn't do it at that time due to possible infection. So we will have to wait to have that removed at her next appointment on the 28th. Overall, it went very smoothly and Lily came out of it much better than previous times. Hallelujah!
OT and PT for Lily are about the same. Still struggling with getting Lily to eat by mouth. It seems like the minute I miss feeding her by mouth she just goes right back to square one and forgets everything that we worked on. Her head seems to be getting stronger and she can sit up with minimal support but not on her own yet. We continue to work on this skill. She also hates to be on her stomach. I am hoping that now that she has the button that she will be more willing to lay on her tummy. Every time the PT puts her on her stomach she just has a fit! Oh well, we will continue to try. She is up for a review of her IFSP but there really isn't much to change on it. I hate those things anyways because Lily is Lily and she will master these skills when she is ready and willing to. That meeting is scheduled for the 31st.
On another note, my dad is starting to show signs of improvement. He was finally taken off the ventilator today and has been breathing on his own fine since earlier today. He will continue to stay in the ICU until they feel that he is more than ready to move on. He still has to have a swallow study done to find out why he aspirated which led to the pneumonia. Not sure where all this will lead us but worst case scenario he may have to have a g-tube like Lily for feeding if his Parkinson's disease has progressed to the point that he is unable to swallow his food correctly anymore. I really think though that he may just need some modifications for eating and he may be ok. He continues to be in my prayers and is on the prayer list at my church. He is a fighter and I feel like the Lord has already done a work in his life.
Summer seems to be flying by so quickly. We have spent many days at the pool and thoroughly enjoyed it. I think Gwynny and I will cry on September 7th the last day it will be open because we both love going there so much. Well, with the pool soon closing it just brings me to the beginning of a whole new avenue for Gwynny. She will be starting preschool on September 1st! I don't know who is more excited me or her! We went up to the school last week and got her registered. She will be going 5 days a week! I know it seems like a lot but with everything that has gone on with Lily it will definitely be good for her to have her own little part of her life that is special! We have an orientation for that next Tuesday night. I also need to go school shopping for her. Man, how time flies!
Well, as I said in the title this is the frosting on the cake with a cherry on top because that is exactly how life felt last week. Hoping for a better week this week and so far I am pleased. If I forgot anything I will try to post again later this week. Till next time...have a great week!
Thursday, August 6, 2009
An exciting yet, sad week.
I can't believe it is Thursday already. My how time flies. I haven't posted since last Tuesday and so much has happened. Well, last Friday we went on a family camping trip, Lily's first camping trip (sorry I didn't take any pics, but eventually may be able to use some of Bill's), to East Harbor State Park. It's a beautiful park and we went with 3 other families from our church. Friday night started out rough because we got a late start and then had to set our tent up in the dark. :( Not fun. Then to make matters worse these obnoxious people were camping in the group site next to ours. They kept us up all night practically Friday going in and out of their vehicles all night, yelling and talking really loud, oh and setting off the panic button on their car remote 3 different times. Who does that?! So annoying!
Saturday was fun! We got up and made breakfast and then took the kids to the beach! Gwynny had a great time playing in the sand and swimming in the very, very shallow water. The only problem was that when we went to leave the beach Gwynny's Dora the Explorer Crocs were no where to be found. I was so upset! She lost them on the beach because they were left at the bottom of the ramp that goes out on the beach, when she arrived at the beach with one of the other families we camped with. We went back later to look for the shoes but they were no where to be found so we ended up driving up to a local Walmart and getting her a new pair. Pain! Saturday night was interesting. After complaining during the day to the campstore about our obnoxious neighbors we thought the problem would be solved. Well, about 11pm they set off their wonderful panic button on their car again so I went off. I proceeded to tell them how rude they were and that I was going to report them. I did just that. Got in my van and my friend and I went down to the Main Gate and reported them. Within 10 minutes of returning to our site the ranger came driving up and got out to talk to whomever was still up, since they all decided to jump in their tents, turn out their lights, and hide. They finally complied with the quiet hours and didn't make any more noise until 7am when it started to rain. Needless to say, we didn't get a whole lot of sleep that night either so since it was raining we packed up the car and were out of there by 10am. All in all we had a great time and can't wait to do it again.
On a sad note...my dad is in the hospital. He went to the doctor on Monday not able to breath well. They gave him some medicine and sent him home. He was having a very hard time breathing and my brother got worried. The doctor told him to take him to the ER so he did. They admitted my dad and after looking him over found that he has aspirational pneumonia. Oh my gosh! Been there, done that! As the day went on Tuesday he worsened and the decided that he needed some help breathing and was placed on a ventilator. He has been on the vent ever since Wednesday early, early in the morning. He is stable and all his vitals look good. They want to try and ween him off the vent here soon. It was soo scary getting the call from my brother. It was also strange seeing my dad in the hospital. After spending so much time in the hospital with Lily I dread even stepping one foot in the door of one, but I knew I needed to be there for my dad. I knew he really couldn't respond to me since he is heavily sedated due to being on the vent but I made sure that I went up to him and told him I was there and how much I love him. I am being optimistic about the whole thing and praying for God's will to be done. I spent only an hour there today but that entire time I prayed for him and read his bible. It is comforting to me to know that so many people are praying for him and so many people care. I wish that he knew. I know my God is able to heal him! He is able to do far exceedingly beyond what we will ever know. God is good and he takes care of those who love him. Thank you Lord for my dad. Lord touch his body and make him whole. Please keep him in your prayers just as many of you did when Liliana was in the hospital. The more people we have trusting and believing together the better.
On a different note, Lily had her 15 month appointment Friday even though she is really only 14 months tomorrow. Our ped is extremely busy and that was the only time they could fit her in. She was amazed at how good Lily looks. Yes, Lily still has a long ways to go with the eating and with sitting up, but she is slowly and steadily getting stronger. Her weight and height looked good as well. I am very happy with her progress and I think I am finally starting to come to grips with the fact that she will develop at her own pace and that is ok with me. Lastly, tomorrow Gwynny turns 4! Mc'Donald's kids party tomorrow at 5pm and the family party on Saturday at 4pm! Argggghhhh! Lots of work ahead of me tomorrow but I'm sure it will be fun.
Saturday was fun! We got up and made breakfast and then took the kids to the beach! Gwynny had a great time playing in the sand and swimming in the very, very shallow water. The only problem was that when we went to leave the beach Gwynny's Dora the Explorer Crocs were no where to be found. I was so upset! She lost them on the beach because they were left at the bottom of the ramp that goes out on the beach, when she arrived at the beach with one of the other families we camped with. We went back later to look for the shoes but they were no where to be found so we ended up driving up to a local Walmart and getting her a new pair. Pain! Saturday night was interesting. After complaining during the day to the campstore about our obnoxious neighbors we thought the problem would be solved. Well, about 11pm they set off their wonderful panic button on their car again so I went off. I proceeded to tell them how rude they were and that I was going to report them. I did just that. Got in my van and my friend and I went down to the Main Gate and reported them. Within 10 minutes of returning to our site the ranger came driving up and got out to talk to whomever was still up, since they all decided to jump in their tents, turn out their lights, and hide. They finally complied with the quiet hours and didn't make any more noise until 7am when it started to rain. Needless to say, we didn't get a whole lot of sleep that night either so since it was raining we packed up the car and were out of there by 10am. All in all we had a great time and can't wait to do it again.
On a sad note...my dad is in the hospital. He went to the doctor on Monday not able to breath well. They gave him some medicine and sent him home. He was having a very hard time breathing and my brother got worried. The doctor told him to take him to the ER so he did. They admitted my dad and after looking him over found that he has aspirational pneumonia. Oh my gosh! Been there, done that! As the day went on Tuesday he worsened and the decided that he needed some help breathing and was placed on a ventilator. He has been on the vent ever since Wednesday early, early in the morning. He is stable and all his vitals look good. They want to try and ween him off the vent here soon. It was soo scary getting the call from my brother. It was also strange seeing my dad in the hospital. After spending so much time in the hospital with Lily I dread even stepping one foot in the door of one, but I knew I needed to be there for my dad. I knew he really couldn't respond to me since he is heavily sedated due to being on the vent but I made sure that I went up to him and told him I was there and how much I love him. I am being optimistic about the whole thing and praying for God's will to be done. I spent only an hour there today but that entire time I prayed for him and read his bible. It is comforting to me to know that so many people are praying for him and so many people care. I wish that he knew. I know my God is able to heal him! He is able to do far exceedingly beyond what we will ever know. God is good and he takes care of those who love him. Thank you Lord for my dad. Lord touch his body and make him whole. Please keep him in your prayers just as many of you did when Liliana was in the hospital. The more people we have trusting and believing together the better.
On a different note, Lily had her 15 month appointment Friday even though she is really only 14 months tomorrow. Our ped is extremely busy and that was the only time they could fit her in. She was amazed at how good Lily looks. Yes, Lily still has a long ways to go with the eating and with sitting up, but she is slowly and steadily getting stronger. Her weight and height looked good as well. I am very happy with her progress and I think I am finally starting to come to grips with the fact that she will develop at her own pace and that is ok with me. Lastly, tomorrow Gwynny turns 4! Mc'Donald's kids party tomorrow at 5pm and the family party on Saturday at 4pm! Argggghhhh! Lots of work ahead of me tomorrow but I'm sure it will be fun.
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