Slowly but surely, my baby boy is becoming a big boy. I pride myself in the fact that I never wished away time. I loved being the mom of a newborn. I used to lay him on his boppy in the morning and we would lay in bed and watch tv for a little while in the morning. I feel like I appreciated all of those moments when he was very little. I was amazed by him. Why would I wish away time? But, I will admit. I feel like we've had a baby for quite some time. I am so excited to have a little boy that runs around, who tells me every detail about a story, who I remind to use his manners. Some may say.. ohh just wait. You'll wish for the days that he was little. I don't think I will.. I have loved those days, but we're ready to move forward. Yes, I said "we." I think Landon is ready to be a big boy. Walking has been a big deal. We encourage, we praise, we hope, we have been working with a physical therapist. It's up to Landon now. He has been regularly taking 4-5 steps to get one from one place to another. His big motivator is daddy and I. Toys and special snacks don't do it. But let just about anyone take Landon and put him across the room from us and he will get to us just on those two feet. His eyes are often watery and his hands a big shaky in desperation to reach us, but he gets there. However, today was a nice surprise... we were at his aunt and uncle's house and continued to encourage him to walk from one person to another and he did. But at one point, he was sitting on my lap, stood up and walked away towards the kitchen. I.AM.SO.PROUD of him!
More good news- we went to see Landon's pediatrician for a weight check and flu shot this week. First of all, he was being sooo crabby. He was mad at me because I would not stand up and walk around the room holding him. But, as soon as Brooke, his pediatrician walked in, he was full of smiles and charm. Stinker! He has grown quite fond of her. I get a kick out of it! He did much better with his flu shot than mommy did. After I got mine, I complained for two days that my arm was sore. He was not at all phased by it. He cried when he got it, but that was the end of that. Thank goodness he's braver than I am! I was ready to load him up on Tylenol to stop him from experiencing the agony that I went through (haha- I told you he's braver than me). I didn't even have to give him anything. And, best yet, he weighed a whopping 18lbs, 6oz!! Wahhooo!! He gained 9oz in one month and was even getting less of his feed because of a cold that was making him vomit. Plus, he was vomiting off and on. Way to go, Landon!
Last but certainly not least, the Cystinosis Magazine is now available. There is article that I wrote about Landon included in the magazine. I got a bunch of copies to give out, but if you'd like to request a copy- they are free. You can e-mail Nancy Stack at nstack@cystinosisresearch.org. Nancy has been a huge support to us since Landon's diagnosis. Her beautiful daughter Natalie was diagnosed with Cystinosis as a baby. She is now in college and has been incredibly successful. Nancy and her husband founded he Cystinosis Research Foundation which is the group that we have been working to raise money for. 100% of the money that goes to the Foundation goes towards research. They have just offered grants to several researchers. It's all very exciting!! Not only is Landon's story featured in there, but there are amazing stories about other people and families affected by this disease and some great information about the disease and the research going on right now. It offers so much hope!
Oh, and one more thing- the article in the Post Gazette will be out on Nov 28th. Make sure to grab your copy of the PG or check it out online at www.postgazette.com. I assume that it will be printed online too. A journalist did a phone interview with me and with Landon's nephrologist. I am very excited to read the article. A photographer also came to our house to take pictures. Landon maintained a poker face the entire time- well until the photographer was walking out the door. He said "buh buh" (buh bye) and blew a kiss.
Saturday, November 19, 2011
Tuesday, November 15, 2011
Thank You...
We are half way through the month when we are reminded to think about what we are thankful for. Ideally I would post on this blog every day something that I am thankful for, but that hasn't happened! I have to say though, I think of things every day that make me thankful. So, here it goes for the first half of the month.
I am thankful for:
1. That little voice that talks himself to sleep at nap and bed time. He sometimes blows kisses too. I wonder if it's to his giraffe?
2. To be involved in so many groups online and in real life that provide support and love- Landon's Mommy and Me Pre-School Class, my April Birthday Club Mommies, South Hills Moms Group, Cystinosis Families Group and Women's Lair Group.
3. To have so many people interested in hearing Landon's story. I wrote an article about our journey with Landon in being diagnosed with Cystinosis for Cystinosis Magazine and was just interviewed by the Post Gazette about this journey and have another interview that is supposed to happen in the near future.
4. For a husband who has the energy and brings his A game when I don't have it in me. It's so refreshing to hear Jimmy in the living room playing with Landon and encouraging him to walk as I clean up after dinner.
5. For Landon's grandparents, aunts and uncles who have learned how to start up and stop his feeds, how to administer meds and how to handle whatever situation may come up while Jimmy and I aren't there. They don't hesitate for a second when we ask any one of them to watch Landon.
6. For Landon's great grandparents who beam with pride when they see him. He is so blessed to have known 3 great grandparents in his life.
7. For Landon's big cousin, Jillian- no one gets him quite as excited as she can!
8. For great aunts and uncles who kiss him, spoil him and support us in ways that we appreciate so very much!
9. For incredible neighbors who I can't say enough about. They've organized fundraisers, attended fundraisers, and have just been great friends all around. We live for those summer nights at the park.. We are so blessed that Landon, and we, will always be around friends.
10. For Rocky! Yes, Rocky our dog. He tolerates being poked and pulled at by our little wild man despite our constant reminders to be nice to Rocky. And, he even gives in at times and allows Landon to cuddle with him or plays tug of war with him.
11. For opportunity- I have recently become a Thirty-One Gifts consultant. So far, it has allowed me to make money, contribute financially to our family and gives me some adult time with wonderful women but also allows a lot of flexibility so I can be here for Landon like I need and want to be.
12. For a mischievous little boy who smiles and looks at me as he does something that he knows he's not supposed to do. He's growing up. He's not a baby like he seemed to be for such a long time.
13. Teachers- Our mothers, Landon's physical therapist, occupational therapist, his pre-school teachers, people on the Cystinosis Boards... I learn something from you all of the time. Thank you for teaching me so that I can be more knowledgeable and a better mother to my son.
14. For my sister, my sister-n-laws, my girl friends... the girl talks, the laughs, the hugs and tears. What would I do without you?
15. My mom- for everything.
I am thankful for:
1. That little voice that talks himself to sleep at nap and bed time. He sometimes blows kisses too. I wonder if it's to his giraffe?
2. To be involved in so many groups online and in real life that provide support and love- Landon's Mommy and Me Pre-School Class, my April Birthday Club Mommies, South Hills Moms Group, Cystinosis Families Group and Women's Lair Group.
3. To have so many people interested in hearing Landon's story. I wrote an article about our journey with Landon in being diagnosed with Cystinosis for Cystinosis Magazine and was just interviewed by the Post Gazette about this journey and have another interview that is supposed to happen in the near future.
4. For a husband who has the energy and brings his A game when I don't have it in me. It's so refreshing to hear Jimmy in the living room playing with Landon and encouraging him to walk as I clean up after dinner.
5. For Landon's grandparents, aunts and uncles who have learned how to start up and stop his feeds, how to administer meds and how to handle whatever situation may come up while Jimmy and I aren't there. They don't hesitate for a second when we ask any one of them to watch Landon.
6. For Landon's great grandparents who beam with pride when they see him. He is so blessed to have known 3 great grandparents in his life.
7. For Landon's big cousin, Jillian- no one gets him quite as excited as she can!
8. For great aunts and uncles who kiss him, spoil him and support us in ways that we appreciate so very much!
9. For incredible neighbors who I can't say enough about. They've organized fundraisers, attended fundraisers, and have just been great friends all around. We live for those summer nights at the park.. We are so blessed that Landon, and we, will always be around friends.
10. For Rocky! Yes, Rocky our dog. He tolerates being poked and pulled at by our little wild man despite our constant reminders to be nice to Rocky. And, he even gives in at times and allows Landon to cuddle with him or plays tug of war with him.
11. For opportunity- I have recently become a Thirty-One Gifts consultant. So far, it has allowed me to make money, contribute financially to our family and gives me some adult time with wonderful women but also allows a lot of flexibility so I can be here for Landon like I need and want to be.
12. For a mischievous little boy who smiles and looks at me as he does something that he knows he's not supposed to do. He's growing up. He's not a baby like he seemed to be for such a long time.
13. Teachers- Our mothers, Landon's physical therapist, occupational therapist, his pre-school teachers, people on the Cystinosis Boards... I learn something from you all of the time. Thank you for teaching me so that I can be more knowledgeable and a better mother to my son.
14. For my sister, my sister-n-laws, my girl friends... the girl talks, the laughs, the hugs and tears. What would I do without you?
15. My mom- for everything.
Wednesday, November 9, 2011
Random
"You'll never know how strong you are until strong is the only choice you have." - Author unknown (at least to me)
A woman on Etsy creates hand painted signs and this was what one of them read. The signs are beautiful (Cait & Create is the name). I won't be buying this one because I think it will make me feel emotional every time I see it. =0) I do, however, plan to buy an adorable chalk board that reads "I Love You Because..." It makes me smile to think of having it on the wall, maybe in our kitchen?
So, you'll have to humor me because I think this post is going to include lots of random thoughts. Jimmy is out of town which means the house is quiet (since Landon has gone to bed) and I am left to my thoughts.
I have some good news! The Lots of Love for Landon Halloween Fundraiser raised about $6,700!!! This is wonderful, especially for our first event! Thank you to everyone who supported us!! I was also asked to write an article about Landon's story for Cystinosis Magazine. The Cystinosis Research Foundation publishes this magazine. Well, I wrote the article and the magazine is finished. We should be getting copies this week or next. I am so excited to see it!! I think it will also be available electronically, so I will include the link!
I warned you that this post was going to be random. I hope I did not disappoint!
A woman on Etsy creates hand painted signs and this was what one of them read. The signs are beautiful (Cait & Create is the name). I won't be buying this one because I think it will make me feel emotional every time I see it. =0) I do, however, plan to buy an adorable chalk board that reads "I Love You Because..." It makes me smile to think of having it on the wall, maybe in our kitchen?
So, you'll have to humor me because I think this post is going to include lots of random thoughts. Jimmy is out of town which means the house is quiet (since Landon has gone to bed) and I am left to my thoughts.
I have some good news! The Lots of Love for Landon Halloween Fundraiser raised about $6,700!!! This is wonderful, especially for our first event! Thank you to everyone who supported us!! I was also asked to write an article about Landon's story for Cystinosis Magazine. The Cystinosis Research Foundation publishes this magazine. Well, I wrote the article and the magazine is finished. We should be getting copies this week or next. I am so excited to see it!! I think it will also be available electronically, so I will include the link!
I warned you that this post was going to be random. I hope I did not disappoint!
Monday, November 7, 2011
Sad Weekend..
It was quite a weekend- very busy and very sad. My grandmother's viewing was on Sunday and her funeral was today. My sister and I read from the New and Old Testament. The reading my dad selected for me was from Proverbs 31. The ironic thing about this is that I just became a consultant for Thirty-One Gifts, which is named after this particular reading in the Old Testament. It is a celebration of women and as I read, I realized that it really described my grandmother. She took care of her family until the day she became very sick.
So, it was an emotional day. My grandmother lived a long life, blessed to be here with us until the age of 83. She suffered, but only for a short period of time. She never had to hear that she had cancer- never had to face the reality of her death. I imagine that she knew her time was limited, as she was 83, and was beginning to feel 83, but no one ever had to tell her that she was going to die in a very short period of time. But, despite all of this, I and my family, feel sad not to have her anymore. I feel especially sad for my grandfather who lost his wife of 60+ years.
As I walked into the funeral home today, knowing that this was going to be our final goodbye, I cried. I was holding Landon and he looked at me with a very concerned look on his face. He then reached over, pressed his lips together and gave me a kiss (including the muah sound effect!). He did this almost every time he saw me crying. What an empathetic little boy we have, right?! =0)
He was a breath of fresh air this weekend. He crawled around the funeral home like we were at home. He's quite a ham! He blew kisses, gave kisses, chased my aunt around while hysterically laughing (don't you just love a belly laugh out of an almost 19 month old?). I noticed my grandfather, as he sat on a chair by the casket, smile and laugh as Landon kept crawling up to the casket and climbing on the kneeler. He was very persistent about wanting to give his great grandmother kisses. How could he not? She was lying so peacefully and looked so beautiful (it sounds strange, but was true!). I convinced him to blow kisses.
Landon was really a perfect little angel this weekend. He entertained at the funeral home and sat quietly at church (he entertained himself in church by brushing his hair with a brush he found in my purse). I know that his great grandma was smiling as she looked down on him.
And as always, Jimmy and I were overwhelmed by the generosity of family and friends. My grandfather included in the obituary that people can make donations to the Cystinosis Research Foundation in memory of my grandmother and in honor of Landon. People did just that. My grandmother adored Landon and worried about him more than I think she let on to anyone. Many candles were lit for him by her and anyone who she could talk to about him. I believe that Landon has several angels looking down on him, but I know this one in particular will watch very closely over him. We love you, Gram!
So, it was an emotional day. My grandmother lived a long life, blessed to be here with us until the age of 83. She suffered, but only for a short period of time. She never had to hear that she had cancer- never had to face the reality of her death. I imagine that she knew her time was limited, as she was 83, and was beginning to feel 83, but no one ever had to tell her that she was going to die in a very short period of time. But, despite all of this, I and my family, feel sad not to have her anymore. I feel especially sad for my grandfather who lost his wife of 60+ years.
As I walked into the funeral home today, knowing that this was going to be our final goodbye, I cried. I was holding Landon and he looked at me with a very concerned look on his face. He then reached over, pressed his lips together and gave me a kiss (including the muah sound effect!). He did this almost every time he saw me crying. What an empathetic little boy we have, right?! =0)
He was a breath of fresh air this weekend. He crawled around the funeral home like we were at home. He's quite a ham! He blew kisses, gave kisses, chased my aunt around while hysterically laughing (don't you just love a belly laugh out of an almost 19 month old?). I noticed my grandfather, as he sat on a chair by the casket, smile and laugh as Landon kept crawling up to the casket and climbing on the kneeler. He was very persistent about wanting to give his great grandmother kisses. How could he not? She was lying so peacefully and looked so beautiful (it sounds strange, but was true!). I convinced him to blow kisses.
Landon was really a perfect little angel this weekend. He entertained at the funeral home and sat quietly at church (he entertained himself in church by brushing his hair with a brush he found in my purse). I know that his great grandma was smiling as she looked down on him.
And as always, Jimmy and I were overwhelmed by the generosity of family and friends. My grandfather included in the obituary that people can make donations to the Cystinosis Research Foundation in memory of my grandmother and in honor of Landon. People did just that. My grandmother adored Landon and worried about him more than I think she let on to anyone. Many candles were lit for him by her and anyone who she could talk to about him. I believe that Landon has several angels looking down on him, but I know this one in particular will watch very closely over him. We love you, Gram!
Thursday, November 3, 2011
A New Angel
Landon is a light in the lives of lots of people around him- his parents, grandparents, aunts, uncles, great aunts and uncles and his great grandparents. He was blessed to have three great grandparents. That changed today... My paternal grandmother, Landon's great grandmother, died today. The big C word- Cancer, took her life. It was about 2 months ago that we noticed that grandma wasn't her usual self. Usually very talkative, she was very quiet and observant. Her energy level decreased and she seemed so tired. The past couple of weeks have been quite a rollercoaster. She was admitted to one hospital, then to a nursing home, then to another hospital.. She had lung cancer (no, she never smoked if you were wondering) which spread to her kidney and probably her bones and brain. She stated in her will that she didn't want surgery or any invasive procedures- so, no biopsy. We won't know the extent of damage the cancer caused. Do we need to know that? Nah..
We have known for about a week that her time here with us was limited. On Monday, Halloween, I dressed Landon in his Buzz Light Year costume and we went to the hospital. I prayed that he would behave and that she would know that he was there. We walked in the room and he began to cry a little. I told him to say "Hi to grandma." He pressed his lips together and made the sound he makes when he is getting ready to give a kiss. I brought him down to her, she pressed her lips together, and they gave each other kisses. I was happy and so relieved. She struggled to stay awake during our visit, but opened her eyes for a moment several times during our visit to talk to him. We couldn't hear or understand her but it was ok. They gave each other kisses when we left and she said "I love you" to him. We understood that. My prayers were answered.. Landon did behave and she knew that he was there. We love you Grandma.
We have known for about a week that her time here with us was limited. On Monday, Halloween, I dressed Landon in his Buzz Light Year costume and we went to the hospital. I prayed that he would behave and that she would know that he was there. We walked in the room and he began to cry a little. I told him to say "Hi to grandma." He pressed his lips together and made the sound he makes when he is getting ready to give a kiss. I brought him down to her, she pressed her lips together, and they gave each other kisses. I was happy and so relieved. She struggled to stay awake during our visit, but opened her eyes for a moment several times during our visit to talk to him. We couldn't hear or understand her but it was ok. They gave each other kisses when we left and she said "I love you" to him. We understood that. My prayers were answered.. Landon did behave and she knew that he was there. We love you Grandma.
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