Our little man turned three yesterday! We are so proud of him! He is such a precious gift, and we are truly blessed by him. He has come so far over the last year and so much has happened! I will post pics and document more about his third birthday very soon!
Beckett has been doing very well with his new flush routine. After a rocky first 6 weeks post-op, we are so thankful for how smoothly things are going now. Over the last several days, he has started having more leakage, so we are going to address this with the doctor tomorrow. It is not as severe as it was last month, but it is definitely starting to "flare up" again.
Tomorrow we have our first appointment at the Cystic Fibrosis clinic in Dallas. We are thankful that they were willing and ready to see Beckett and his unique case. We think it will greatly benefit his care to see all of his specialists in one location. This way they will be able to work together in an easier, more convenient and quicker way to do what is best for Beckett. It is also waaaay closer to us which equals less drive time and less gas money. So we are excited for this change. I am just praying the transition goes smoothly, especially with his rare presentation. I am not sure what to expect as all CF clinics apparently have different protocols and ways of doing things. I am also unsure of what their evaluation of Beckett's diagnosis will be. So I am anxious to get to the appointment and get their opinion on what direction we need to go with treatment for him. When Beckett was inpatient in July, we got to meet the CF GI specialist. This is a GI dr that specializes in kids with Cystic Fibrosis. I am thankful that we have gotten to meet and she has had a sort of "preview" of Beckett. The CF clinic in Dallas involves appointments with both a GI and a pulmonologist so we will be seeing both tomorrow. This is new for us because the Houston CF clinic only involves the pulmonologist. I think this will be of great benefit to him seeing as how he is so GI involved. I am thankful for this opportunity to see such a specialized specialist.
Thank you so much for your continued prayers for us. Beckett is doing so incredibly well. His energy level has increased, he just seems so happy. We are very thankful for how he is doing. Please pray for his appointments tomorrow. We also have his "well-child" appointment and an appointment with a new endocrinologist coming up next week, so lots of appointments these next couple weeks. Thanks you so much for checking in and for your prayers.
Monday, September 30, 2013
Thursday, September 5, 2013
TBT- Do the work
For another throw back Thursday-- (not thrown real far back bc I only have three years to work with here...)
This is a post that is a lot easier said then done. Now, we are no longer living in that "post-baby phase" and we have pretty much established our new normal. But it is still hard sometimes--and I think everyone can relate. It is hard to wake up and feel like, "Game on. Let's do the work." Especially when "the work" is constantly changing-- as it is in everyone's lives. Of course, we can all tell ourselves to "just be strong and do the work" all day long, but to actually do it and feel courageous is a whole different ball game! It's a struggle.
I am constantly reminding myself of I Chronicles 28 and attempting to do the work in a "He's got this" kind-of-way. It is a daily prayer in our family.
Finding "Normal" originally posted in October 2011
My eyes and my heart just focused in on David's instruction to his son to "do the work," not just once, but twice in this chapter. Do not let the fear of the size of the task be too overwhelming because God is with you. Don't be discouraged that you are an exhausted mother. Keep going, do the work. Don't be afraid of the unknown. Keep going because He is with you and He will not leave you...even in what seems to be too big of a job. Remember, He will not fail you. Earlier in verse 10, David is telling Solomon, "Consider now, for the Lord has chosen you to build a house as the sactuary. Be strong and do the work."
Be strong and do the work.
So I have a choice to make.
This is a post that is a lot easier said then done. Now, we are no longer living in that "post-baby phase" and we have pretty much established our new normal. But it is still hard sometimes--and I think everyone can relate. It is hard to wake up and feel like, "Game on. Let's do the work." Especially when "the work" is constantly changing-- as it is in everyone's lives. Of course, we can all tell ourselves to "just be strong and do the work" all day long, but to actually do it and feel courageous is a whole different ball game! It's a struggle.
I am constantly reminding myself of I Chronicles 28 and attempting to do the work in a "He's got this" kind-of-way. It is a daily prayer in our family.
Finding "Normal" originally posted in October 2011
After the addition of a new baby to a family, I think it is common to let a few things go as you adjust to your new life. You may get to-go food a few too many nights a week...(try 7) Or you may let the laundry pile turn into a mountain. You may let yourself off the hook for some social obligations. Your older child(ren) may watch more TV than you previously thought was acceptable. Whatever the case may be, for about 6 to 12 weeks post new baby, something's gotta give as you adjust to this new precious addition to your family. So you look around and you see your new (and old) chaos, but it just doesn't matter anymore. And all you really need to do is enjoy your baby and get sleep when you can because the dishes can wait. Life is in limbo, but you know that new routines will be established, you will sleep again, and everyone will adjust.
Well, we have been living in that newborn limbo for 13 months. I am not too proud to admit that over a year later, there are still bottles filling the sink (or the counters, if they made it that far), the theme song to Mickey Mouse Clubhouse plays a few too many times, and wrappers from last night's burgers in the trashcan. When I was pregnant with Baby B, I had grand plans of what our day would look like and how I would juggle special time with each boy. I had ideas of lining up nap/rest times and bedtimes. The adjustment has taken quite a bit longer than I had anticipated, and I still find that I am allowing myself off the hook for typical daily responsibilities with the disclaimer that "Well, it's like I still have a new baby on 7 feedings a day."
And then I woke up the other day...errr, dragged myself out of bed when I was being summoned...and realized that it is time. It is time to establish some kind of a new normal even amoungst the bottle feedings and appointments. It is time to realize that this is exactly where God has me. This is the job that he has blessed me with, and it is a very special one for which I am so grateful.
A couple weeks ago, I was studying Bible verses on courage. I often pray courage for my family. And I came across this verse from 1 Chronicles 28:
Well, we have been living in that newborn limbo for 13 months. I am not too proud to admit that over a year later, there are still bottles filling the sink (or the counters, if they made it that far), the theme song to Mickey Mouse Clubhouse plays a few too many times, and wrappers from last night's burgers in the trashcan. When I was pregnant with Baby B, I had grand plans of what our day would look like and how I would juggle special time with each boy. I had ideas of lining up nap/rest times and bedtimes. The adjustment has taken quite a bit longer than I had anticipated, and I still find that I am allowing myself off the hook for typical daily responsibilities with the disclaimer that "Well, it's like I still have a new baby on 7 feedings a day."
And then I woke up the other day...errr, dragged myself out of bed when I was being summoned...and realized that it is time. It is time to establish some kind of a new normal even amoungst the bottle feedings and appointments. It is time to realize that this is exactly where God has me. This is the job that he has blessed me with, and it is a very special one for which I am so grateful.
A couple weeks ago, I was studying Bible verses on courage. I often pray courage for my family. And I came across this verse from 1 Chronicles 28:
David also said to Solomon his son, "Be strong and courageous, and do the work. Do not be afraid or discouraged, for the Lord God, my God, is with you. He will not fail you or forsake you until all the work for the service of the temple of the Lord is finished..."
My eyes and my heart just focused in on David's instruction to his son to "do the work," not just once, but twice in this chapter. Do not let the fear of the size of the task be too overwhelming because God is with you. Don't be discouraged that you are an exhausted mother. Keep going, do the work. Don't be afraid of the unknown. Keep going because He is with you and He will not leave you...even in what seems to be too big of a job. Remember, He will not fail you. Earlier in verse 10, David is telling Solomon, "Consider now, for the Lord has chosen you to build a house as the sactuary. Be strong and do the work."
Be strong and do the work.
So I have a choice to make.
A) I can continue to love and nurture my children in a sort of "survival" mode (i.e. too much TV & not enough reading, too many take out or frozen meals, crawling out of bed when they wake up, leaving chores for another day...)
OR
B) I can continue to love and nurture my children in a "He's Got This and I can do the work" mode.
Regardless, the love and nurture is always there, and regardless, there will always be days when it is okay to leave the dishes in the sink. But it's just how I get through the day to day. I have just felt like it is time to be more intentional, be strong, and do the work...even in this sleep deprived state.
I choose option B. Do the work that God has given me to do today, each day. I will probably still have hard days...days where it all feels like too much. Days that I long to "fix" my child's health. Days where dinner might not get done. And that will be OK. Don't expect to see a spotless house if you come visit...But I am tired of living in this "post new baby" state of mind. (My hair is tired of being here, too.) It is time to find some kind of new normal and do the work...whatever that work might be each day. And be grateful that I have such precious work to do!
I choose option B. Do the work that God has given me to do today, each day. I will probably still have hard days...days where it all feels like too much. Days that I long to "fix" my child's health. Days where dinner might not get done. And that will be OK. Don't expect to see a spotless house if you come visit...But I am tired of living in this "post new baby" state of mind. (My hair is tired of being here, too.) It is time to find some kind of new normal and do the work...whatever that work might be each day. And be grateful that I have such precious work to do!
Wednesday, September 4, 2013
What a Month!
Whew! What a month August was! I am sorry for not posting more frequently...or at all.
As is the nature of this blog and Beckett's health, I will warn you that you possibly do not want to be snacking while reading. :)
We were on the road for much of August, and when we were not traveling, our days and evenings were filled with swimming lessons, back to school events, and medical care for Beckett.
In just 3 weeks in August, we traveled to Dallas three times and Houston 2 times. We saw the GI doctor, the surgeon, the CF specialist (pulmonologist), and he had a couple of different tests run. So I actually had a lot to update on, but just no time and/or energy to do it!
GI Update
We saw the GI doctor at the first of the month. Beckett's flushes were unfortunately very unsuccessful at this point. She changed up the plan of what we needed to flush through the cecostomy. Then, if that didn't work within 12 hours, we were to give him an enema. In addition, she put him on Flagyl for the first week of every month to treat Small Intestinal Bacterial Overgrowth, as well as Erythromycin to help speed up the motility of his GI tract.
The Flagyl and Erythromycin did seem to help with his severe distention so that was good. However, the flushes were still going wrong...like literally the wrong direction. So as soon as we put the flush in, it all refluxed back up and out of the button site. So clearly, this wasn't going to work as not only was the flush not coming out, but it wasn't even going through him or in him. Then, the button started leaking stool...a lot of it. So we went back to Dallas for a radiological study to see if the cecostomy tube was in the right position. This would help confirm if it was a mechanical issue with the tube or the flush just not working. The tube was confirmed to be in the correct spot, and of course, the flush didn't come back out at the hospital (for them to witness). It waited until about 15 minutes after leaving the hospital. Frustrating. It has been tough, and sweet boy shed many tears over the situation. Not easy. Long month.
The flush recipe has since been changed and....drumroll, please-- Nearly 2 months post-op, and it is working. For the last week, the flush has been doing its job. Hallelujah! We are so relieved and thankful for that! He is on quite a hefty amount of meds for it to work, but it is working! Unfortunately, he is still leaking a lot of stool, which is definitely a problem. We hope to get that resolved quickly.
Surgery Update
The surgeon is very pleased with the healing of the incision and the tube site. He has a small bit of something called granulation tissue around the button, but it is not horrible at this point. He unfortunately seems to have a bit of a rash around the button, but it is controlled and not causing Beckett any discomfort. The surgeon does not need to see Beckett again unless there is a problem.
CF Clinic Update
We really like the CF clinic in Houston at Tx Children's. Of all the specialists that we saw there, I would have to say that he is my favorite. Hence, the reason we drive all the way to Houston to see him. Unfortunately this time around, the appointment was the morning after the GI appointment in Dallas. So that made for a busy couple of days and three tanks of gas!! There is nothing to eventful to report from this appointment. He wasn't overly impressed with Beckett's growth, but he also wasn't overly concerned about it. We did learn that Beckett's pancreas elastase test came back showing moderate to severe pancreatic insufficiency. This does go along with Cystic Fibrosis. It means that his body is not absorbing food appropriately (which could make weight gain quite difficult). We discussed his enzymes-- the med that helps his body break down, digest, and absorb food-- and were instructed further on these. We also decided to return for a repeat sweat test. The sweat test came back normal. No big surprise there...it has been normal in the past, and he has never followed those text books!
Genetics Update
This can be slightly controversial, but we sent Beckett's blood work on to whole genome sequencing. They believe through this process, perhaps they can discover the cause of Beckett's trouble. In turn, it might be able to help other people some day who are struggling similarly. It also might help us know how to treat his health problems and how to best help him.
And Coming Up--
Tomorrow Beckett has a GI appointment, so back to Dallas we go. Prayers for safe and easy travels for me and Beckett would be very appreciated. Please pray that we get some ideas on how to improve this leakage problem. Also, I am going to talk to her about the possibility of a CF specialist in Dallas seeing Beckett. After our constant travels in 2 directions last month and some discussions with doctors, we feel that - as much as I like the CF doctor- we need to get all his specialists in one place. And we have decided on Dallas. It will not only help with the traveling, but it will also help in the consistency in Beckett's care. This necessary consistency is actually the bigger reason. The communication within one hospital is much easier and more streamline and everyone is able to work together for a greater good it seems. However, we are not sure if we will be able to find a CF specialist to see Beckett in Dallas as he is so very non-classic. Praying for just the right doctor. And if there isn't one in Dallas, then we will continue to juggle the two.
We also will see Endocrine again soon. The GI thinks that we need Endocrine to check on a couple of things for us including diabetes and hypoglycemia. And the geneticist thinks it could be helpful to discuss growth hormones. She says there is no way to know if they will work for Beckett or not, since we do not know his diagnosis, but that it may be worth looking into.
OK, I think I have covered all of the major updates in this whirlwind of a post. Pretty quick and to the point! I will post more soon. It shouldn't take me so long to update again.
I also have some pretty sweet picture of my big boy going to Kindergarten! I will be back to share those soon.
Thank you so much for your prayers over this last crazy month. We really appreciate them and need them. So thank you. And thank you for your texts and messages checking in on us! We will keep you updated and let you know how he is doing!
Love-
Kaylan
As is the nature of this blog and Beckett's health, I will warn you that you possibly do not want to be snacking while reading. :)
We were on the road for much of August, and when we were not traveling, our days and evenings were filled with swimming lessons, back to school events, and medical care for Beckett.
In just 3 weeks in August, we traveled to Dallas three times and Houston 2 times. We saw the GI doctor, the surgeon, the CF specialist (pulmonologist), and he had a couple of different tests run. So I actually had a lot to update on, but just no time and/or energy to do it!
GI Update
We saw the GI doctor at the first of the month. Beckett's flushes were unfortunately very unsuccessful at this point. She changed up the plan of what we needed to flush through the cecostomy. Then, if that didn't work within 12 hours, we were to give him an enema. In addition, she put him on Flagyl for the first week of every month to treat Small Intestinal Bacterial Overgrowth, as well as Erythromycin to help speed up the motility of his GI tract.
The Flagyl and Erythromycin did seem to help with his severe distention so that was good. However, the flushes were still going wrong...like literally the wrong direction. So as soon as we put the flush in, it all refluxed back up and out of the button site. So clearly, this wasn't going to work as not only was the flush not coming out, but it wasn't even going through him or in him. Then, the button started leaking stool...a lot of it. So we went back to Dallas for a radiological study to see if the cecostomy tube was in the right position. This would help confirm if it was a mechanical issue with the tube or the flush just not working. The tube was confirmed to be in the correct spot, and of course, the flush didn't come back out at the hospital (for them to witness). It waited until about 15 minutes after leaving the hospital. Frustrating. It has been tough, and sweet boy shed many tears over the situation. Not easy. Long month.
The flush recipe has since been changed and....drumroll, please-- Nearly 2 months post-op, and it is working. For the last week, the flush has been doing its job. Hallelujah! We are so relieved and thankful for that! He is on quite a hefty amount of meds for it to work, but it is working! Unfortunately, he is still leaking a lot of stool, which is definitely a problem. We hope to get that resolved quickly.
Surgery Update
The surgeon is very pleased with the healing of the incision and the tube site. He has a small bit of something called granulation tissue around the button, but it is not horrible at this point. He unfortunately seems to have a bit of a rash around the button, but it is controlled and not causing Beckett any discomfort. The surgeon does not need to see Beckett again unless there is a problem.
CF Clinic Update
We really like the CF clinic in Houston at Tx Children's. Of all the specialists that we saw there, I would have to say that he is my favorite. Hence, the reason we drive all the way to Houston to see him. Unfortunately this time around, the appointment was the morning after the GI appointment in Dallas. So that made for a busy couple of days and three tanks of gas!! There is nothing to eventful to report from this appointment. He wasn't overly impressed with Beckett's growth, but he also wasn't overly concerned about it. We did learn that Beckett's pancreas elastase test came back showing moderate to severe pancreatic insufficiency. This does go along with Cystic Fibrosis. It means that his body is not absorbing food appropriately (which could make weight gain quite difficult). We discussed his enzymes-- the med that helps his body break down, digest, and absorb food-- and were instructed further on these. We also decided to return for a repeat sweat test. The sweat test came back normal. No big surprise there...it has been normal in the past, and he has never followed those text books!
Genetics Update
This can be slightly controversial, but we sent Beckett's blood work on to whole genome sequencing. They believe through this process, perhaps they can discover the cause of Beckett's trouble. In turn, it might be able to help other people some day who are struggling similarly. It also might help us know how to treat his health problems and how to best help him.
And Coming Up--
Tomorrow Beckett has a GI appointment, so back to Dallas we go. Prayers for safe and easy travels for me and Beckett would be very appreciated. Please pray that we get some ideas on how to improve this leakage problem. Also, I am going to talk to her about the possibility of a CF specialist in Dallas seeing Beckett. After our constant travels in 2 directions last month and some discussions with doctors, we feel that - as much as I like the CF doctor- we need to get all his specialists in one place. And we have decided on Dallas. It will not only help with the traveling, but it will also help in the consistency in Beckett's care. This necessary consistency is actually the bigger reason. The communication within one hospital is much easier and more streamline and everyone is able to work together for a greater good it seems. However, we are not sure if we will be able to find a CF specialist to see Beckett in Dallas as he is so very non-classic. Praying for just the right doctor. And if there isn't one in Dallas, then we will continue to juggle the two.
We also will see Endocrine again soon. The GI thinks that we need Endocrine to check on a couple of things for us including diabetes and hypoglycemia. And the geneticist thinks it could be helpful to discuss growth hormones. She says there is no way to know if they will work for Beckett or not, since we do not know his diagnosis, but that it may be worth looking into.
OK, I think I have covered all of the major updates in this whirlwind of a post. Pretty quick and to the point! I will post more soon. It shouldn't take me so long to update again.
I also have some pretty sweet picture of my big boy going to Kindergarten! I will be back to share those soon.
Thank you so much for your prayers over this last crazy month. We really appreciate them and need them. So thank you. And thank you for your texts and messages checking in on us! We will keep you updated and let you know how he is doing!
Love-
Kaylan
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