Mom and Dad were able to join us for Thanksgiving this year. I made my first Turkey Day feast (see my other blog, http://berrybrandonnicole.blogspot.com for more info on that), and we had a wonderful time together with Brandon's family.
One funny thing that happened was before we ate, we all went around the table sharing what everyone was thankful for in our lives. At the beginning of this exercise, Ella announced that she had to use the potty (she's in training these days), so someone ushered her excitedly into the bathroom. We heard her potty play the reward music and she ran back into the living room announcing, "I did it!!!". We all clapped and congratulated her and then went back to our pre-meal sharing time.
Then as Mom was sharing what was in her heart...and the tears were coming to us as emotions were running high, Ella decided that our applause wasn't enough for her because she ran back to the bathroom and carried her potty (it hadn't even yet been emptied!) down the hall and to the dining table, exclaiming, "Guys, I pee-peed in the POTTY! See?????"
Thank God for a little comic relief, right?
Sunday, November 29, 2009
Thursday, November 19, 2009
Another Good E & A Fix
After being discharged from the Cleveland Clinic this weekend, Mom and Dad stopped in Greenville to see us on Sunday night on their way home. It had been a while since their last "E & A fix", and they needed a booster shot, so to speak.
The girls were excited to see Grammy and Pappy, too. We let them stay up a little later on Sunday night to see them when they arrived. We all went to bed shortly after that and woke up on Monday morning to some good breakfast and family time.
Brandon had to go into the office around lunch, but the rest of us stayed home and enjoyed each other's company immensely. It is interesting to see how much we cherish each minute now. Some of them are filled with joy, some sadness...it's all a part of the process, I guess. We are past the wierdness of spontaneous tears...they seem to come and go throughout the day. But, for the most part, we're just having fun watching Ella and Allie be awesome kids.
Allie has always had eyes for her Grammy. Mom says she looks at her like she sees her soul or something. It's fun to watch them stare at each other. Allie has gotten to be quite active now, though, so she'll grab for Mom's oxygen mask or at her Flolan tubes, so I have to be close by to make sure things stay where they should...supervised visits!
They left on Tuesday morning, and headed to Columbia. It had been a week since they'd been home and seen their kitties, who I'm sure, were very glad to have them back.
If all goes as planned and Mom's up to it, I'm hosting Thanksgiving at my house and both families will be here to celebrate.
We have much to be thankful for.
The girls were excited to see Grammy and Pappy, too. We let them stay up a little later on Sunday night to see them when they arrived. We all went to bed shortly after that and woke up on Monday morning to some good breakfast and family time.
Brandon had to go into the office around lunch, but the rest of us stayed home and enjoyed each other's company immensely. It is interesting to see how much we cherish each minute now. Some of them are filled with joy, some sadness...it's all a part of the process, I guess. We are past the wierdness of spontaneous tears...they seem to come and go throughout the day. But, for the most part, we're just having fun watching Ella and Allie be awesome kids.
Allie has always had eyes for her Grammy. Mom says she looks at her like she sees her soul or something. It's fun to watch them stare at each other. Allie has gotten to be quite active now, though, so she'll grab for Mom's oxygen mask or at her Flolan tubes, so I have to be close by to make sure things stay where they should...supervised visits!
They left on Tuesday morning, and headed to Columbia. It had been a week since they'd been home and seen their kitties, who I'm sure, were very glad to have them back.
If all goes as planned and Mom's up to it, I'm hosting Thanksgiving at my house and both families will be here to celebrate.
We have much to be thankful for.
Thursday, November 12, 2009
A Little Run Down
Mom and Dad made a trip up to Cleveland for a checkup. The trip often times wears her out, so I was not surprised to hear that they admitted her to the hospital to get her back on her feet again. She said last night was rough as they gave her some potassium which upset her stomach. Dad is with her right now, and they have not yet heard when they will be discharged. We are looking forward to the possiblity of them stopping by for an E & A Fix (see below for details). It all depends on how she's feeling on the trip home.
Speaking of Ella & Allie...they are doing great. Allie is getting her 4th tooth in today, so she's a little bit fussy. She's also crawling at lightning fast speeds, pulling up on anything she can, cruising around the furniture, and also doing a little, "look mom, no hands!" and standing on her own before her diapered heiny hits the floor. She's so animated and energetic--I have a hard time keeping up with her! Yesterday she was pulling up on the coffee table and bumped her eye on the underside of one of the corners that juts out...I thought I was such a good mama for child-proofing the corners from the top-side in case they fall into them...didn't think about doing the underside, too! She's fine, didn't cry too much I was more upset than her...a tough little girl and a tough lesson for mama.
By the way...happy birthday to Dale (one of mom's bff's) and Mommom (Mom's mom!) Love y'all! Another year old and better looking, I say!
Speaking of Ella & Allie...they are doing great. Allie is getting her 4th tooth in today, so she's a little bit fussy. She's also crawling at lightning fast speeds, pulling up on anything she can, cruising around the furniture, and also doing a little, "look mom, no hands!" and standing on her own before her diapered heiny hits the floor. She's so animated and energetic--I have a hard time keeping up with her! Yesterday she was pulling up on the coffee table and bumped her eye on the underside of one of the corners that juts out...I thought I was such a good mama for child-proofing the corners from the top-side in case they fall into them...didn't think about doing the underside, too! She's fine, didn't cry too much I was more upset than her...a tough little girl and a tough lesson for mama.
By the way...happy birthday to Dale (one of mom's bff's) and Mommom (Mom's mom!) Love y'all! Another year old and better looking, I say!
Tuesday, November 10, 2009
Now to the 'Fund' Part...
This November will mark the 4 year anniversary of Cris’ diagnosis with PH, and she has defied all of the prognosis reports she’s been given thus far! We are so thankful to have her with us as she continues to spread love, joy, and encouragement to everyone. Since she’s begun battling, she’s seen the birth of two granddaughters who brighten her life in special ways, and have given her even more reason not to give up. With all that we have to be thankful for, we are still very aware that we are in a battle. Cris’ disease is in its last stage. She is currently on the transplant list for a new set of lungs, and an anticipated surgery is set to be performed at the Cleveland Clinic in OH, one of the country’s best hospitals.
Despite the fact that many lungs have already been given to other recipients because they have not matched Cris, the doctors are still saying that there is hope, and that the matching lungs could arrive any minute. So we continue to believe that she will have another opportunity to live life to the fullest and have an impact on those around her for years to come. When a matching pair of lungs arrives, the Cleveland Clinic will notify Jack and Cris and then send a private jet to transport them to Cleveland where final tests will be performed to ensure the best success rate. The operation will then take place. After the operation, Cris can expect to stay in the hospital a couple of weeks and then be discharged to rehabilitate anywhere from 8 to 10 weeks. During this time Jack will no doubt be by her side encouraging her healing, and I (Nicole) will be traveling back and forth as much as possible.
Until then, every two months, Jack and Cris travel to Cleveland for her examinations by the transplant team. This is a long and difficult endeavor, but they have been able to make the most of it. Jack has considerably reduced his business workload to be able to give Cris around-the-clock care. Who knew that he would turn out to be so great a nurse and caregiver?!? We are amazed at the sacrificial love that he has displayed again and again.
Unfortunately, with all the travel expenses to Ohio and North Carolina, and the impending uninsured costs of the transplant, rehabilitation, medication, and caretaker expenses in Cleveland, our family is looking at what seems to be an ever-increasing pile of potential financial hardship. We have come to the humbling realization that we cannot do everything on our own. We have been blessed to be surrounded by faithful friends and family, coworkers and neighbors who have asked again and again, “what can I do to help?”
Asking for help is never easy, and you may know that it is especially hard for someone who is used to giving the help. With that being said, we would like to ask you to consider how you may help the Malseed family in our time of need. Here are a few ways:
• We have partnered with the National Transplant Assistance Fund, a non-profit organization that has been assisting the transplant community for the past 25 years. All contributions are administered by NTAF exclusively for uninsured transplant-related expenses. Donations are tax-deductible to the full extent of the law. You can send your tax-deductible donations with the attached form to: NTAF South-Atlantic Lung Transplant Fund, 150 N. Radnor Chester Rd., Ste. F-120, Radnor, PA 19087. Print in memo section of check: “In Honor of Cris Malseed” or donate online at www.transplantfund.org and enter Malseed in the box on the NTAF homepage.
• Every uplifting word can help Cris and Jack. You can encourage them by dropping a note in the mail or email (crismalseed@hotmail.com, jackmalseed@hotmail.com). You can also follow updates through our blog: http://battlingph.blogspot.com.
• We believe in a mighty God who has the power to do anything…far beyond what we can even ask or imagine (Ephesians 3:20)! It would mean so much for you to join us in praying for God’s will to be done in this situation, for Him to provide through His people, and for Him to be glorified in our lives. Pray for continued strength and patience for our family as we battle Pulmonary Hypertension.
Thank you in advance for your love and support.
Joyfully,
The Malseed Family (Cris, Jack, and Nicole Berry)
Contributions are tax-deductible to the extent allowed by the law. This campaign is administered by the National Transplant Assistance Fund, a 501(c)(3) nonprofit providing fundraising assistance to transplant and catastrophic injury patients. Information: 800-642-8399.
Despite the fact that many lungs have already been given to other recipients because they have not matched Cris, the doctors are still saying that there is hope, and that the matching lungs could arrive any minute. So we continue to believe that she will have another opportunity to live life to the fullest and have an impact on those around her for years to come. When a matching pair of lungs arrives, the Cleveland Clinic will notify Jack and Cris and then send a private jet to transport them to Cleveland where final tests will be performed to ensure the best success rate. The operation will then take place. After the operation, Cris can expect to stay in the hospital a couple of weeks and then be discharged to rehabilitate anywhere from 8 to 10 weeks. During this time Jack will no doubt be by her side encouraging her healing, and I (Nicole) will be traveling back and forth as much as possible.
Until then, every two months, Jack and Cris travel to Cleveland for her examinations by the transplant team. This is a long and difficult endeavor, but they have been able to make the most of it. Jack has considerably reduced his business workload to be able to give Cris around-the-clock care. Who knew that he would turn out to be so great a nurse and caregiver?!? We are amazed at the sacrificial love that he has displayed again and again.
Unfortunately, with all the travel expenses to Ohio and North Carolina, and the impending uninsured costs of the transplant, rehabilitation, medication, and caretaker expenses in Cleveland, our family is looking at what seems to be an ever-increasing pile of potential financial hardship. We have come to the humbling realization that we cannot do everything on our own. We have been blessed to be surrounded by faithful friends and family, coworkers and neighbors who have asked again and again, “what can I do to help?”
Asking for help is never easy, and you may know that it is especially hard for someone who is used to giving the help. With that being said, we would like to ask you to consider how you may help the Malseed family in our time of need. Here are a few ways:
• We have partnered with the National Transplant Assistance Fund, a non-profit organization that has been assisting the transplant community for the past 25 years. All contributions are administered by NTAF exclusively for uninsured transplant-related expenses. Donations are tax-deductible to the full extent of the law. You can send your tax-deductible donations with the attached form to: NTAF South-Atlantic Lung Transplant Fund, 150 N. Radnor Chester Rd., Ste. F-120, Radnor, PA 19087. Print in memo section of check: “In Honor of Cris Malseed” or donate online at www.transplantfund.org and enter Malseed in the box on the NTAF homepage.
• Every uplifting word can help Cris and Jack. You can encourage them by dropping a note in the mail or email (crismalseed@hotmail.com, jackmalseed@hotmail.com). You can also follow updates through our blog: http://battlingph.blogspot.com.
• We believe in a mighty God who has the power to do anything…far beyond what we can even ask or imagine (Ephesians 3:20)! It would mean so much for you to join us in praying for God’s will to be done in this situation, for Him to provide through His people, and for Him to be glorified in our lives. Pray for continued strength and patience for our family as we battle Pulmonary Hypertension.
Thank you in advance for your love and support.
Joyfully,
The Malseed Family (Cris, Jack, and Nicole Berry)
Contributions are tax-deductible to the extent allowed by the law. This campaign is administered by the National Transplant Assistance Fund, a 501(c)(3) nonprofit providing fundraising assistance to transplant and catastrophic injury patients. Information: 800-642-8399.
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