Call us (or just me) crazy...but we are headed to Minnesota on Sunday to see a therapist that has a possible fix for Carson's throwing up. I made SEVERAL phone calls yesterday and after talking with the family, we have decided to give it a try and this coming week was the best option. I am very excited and hopeful. I'm praying that I can tell anyone that doubts (sometimes even myself) "I told you so" : ) next week. I just want what is best for Carson, so we are going to try this less invasive, alternative option first (it is a combination of several treatments but I believe it follows along the lines of visceral mobilization). And if it works...GREAT! And if it doesn't then I will feel better about having a surgery, knowing we tried the other option. We can use ALL the prayers we can get as we will be driving 10 hours with two little guys that prefer NOT to be stuck in their car seats! Also, please be praying for the weather...I believe Minneapolis got 6-8" of snow in the past couple days....ugggh!!
Carson will be seen by the therapist in Minneapolis Tuesday, Wednesday, and Thursday! She thinks we should see results after the first two days. I'm really praying we can post some really positive results next week! I will update as I can...but my mom, Preston, Kellen, Carson, and I will be heading north soon! And a big thank you to our family in Minneapolis that have opened their home to us with such short notice!!!!
Friday, April 19, 2013
Wednesday, April 17, 2013
Back to prayers for weight gain : )
Another update from the Clark household... First off, we are LOVING the warmer weather! The boys cannot get enough of the outdoors, however we are often limited because we live in Dexter's wind tunnel : ) The boys seem to be pretty much back to normal (in terms of health)...unfortunately, when Carson got the little 'bug' we also saw a return to his puking pattern. He is back to throwing up every day : ( So I ask for prayers for the little man...I was so hopeful that he may have turned a corner after his most recent surgery but it seems to have been short lived.
We had a follow up appointment today, with the surgeon in St. Louis that most recently revised his Gtube site. Overall, I thought the appointment was positive. The G tube site is growing excessive granulation tissue and we will be using silver nitrate to treat that with hopes of getting it to disappear. This is a fairly common problem with G-tubes or G-buttons. Preston and I were hopeful that after this surgery we could switch to a G-button (the lower profile tube) but Dr. Vane is not optimistic that it will work due to the high pressures in Carson's belly. He thinks we will have leakage issues. Dr. Vane believes Carson's stomach is NOT emptying like it should due to likely damage to the vagus nerve during the teratoma resection. Although Carson continues to gain weight overall, he is starting to lag behind his typically weight gain and is falling below the 25th percentile. As Dr. Vane reiterated today, growth is SO important right now for overall development but also brain development. SO...this leads us to our prayer request....WEIGHT GAIN!!! Dr. Vane is giving Carson a month to gain enough weight to reach the 25th percentile...this is approximately 1.5 pounds. If he does not gain enough weight, Dr. Vane will recommend having the pyloroplasty (opening the area between his stomach and small intestine) done. He says this is a very successful surgery with low risks. Of course, I do not want to have to add another surgery to his list because EVERY surgery has risks...but I ALSO want him to get proper nutrition.
Along those lines, we (I should say "I") have also been looking at a less invasive, alternative form of therapy that could assist in the emptying of his stomach and possibly improve his swallow (thanks to some insight from other family members). The issue here is that the therapist who is the most qualified and we would like to see is in Minnesota, which is a 12 hour drive. A trip like that would require ALOT of planning, coordination, time, and teamwork without knowing that this 'therapy' would actually be a fix. So, we have been praying about the best, next step to take and appreciate all your prayers too!
The boys continue to provide lots of joy and laughter every day...Kellen is Mr. Climber and loves to explore! Carson is walking more and more but still prefers to have a hand to hold. He is also continuing to taste more and more food and is trying small sips of liquid. This is an awesome improvement!!
We had a follow up appointment today, with the surgeon in St. Louis that most recently revised his Gtube site. Overall, I thought the appointment was positive. The G tube site is growing excessive granulation tissue and we will be using silver nitrate to treat that with hopes of getting it to disappear. This is a fairly common problem with G-tubes or G-buttons. Preston and I were hopeful that after this surgery we could switch to a G-button (the lower profile tube) but Dr. Vane is not optimistic that it will work due to the high pressures in Carson's belly. He thinks we will have leakage issues. Dr. Vane believes Carson's stomach is NOT emptying like it should due to likely damage to the vagus nerve during the teratoma resection. Although Carson continues to gain weight overall, he is starting to lag behind his typically weight gain and is falling below the 25th percentile. As Dr. Vane reiterated today, growth is SO important right now for overall development but also brain development. SO...this leads us to our prayer request....WEIGHT GAIN!!! Dr. Vane is giving Carson a month to gain enough weight to reach the 25th percentile...this is approximately 1.5 pounds. If he does not gain enough weight, Dr. Vane will recommend having the pyloroplasty (opening the area between his stomach and small intestine) done. He says this is a very successful surgery with low risks. Of course, I do not want to have to add another surgery to his list because EVERY surgery has risks...but I ALSO want him to get proper nutrition.
Along those lines, we (I should say "I") have also been looking at a less invasive, alternative form of therapy that could assist in the emptying of his stomach and possibly improve his swallow (thanks to some insight from other family members). The issue here is that the therapist who is the most qualified and we would like to see is in Minnesota, which is a 12 hour drive. A trip like that would require ALOT of planning, coordination, time, and teamwork without knowing that this 'therapy' would actually be a fix. So, we have been praying about the best, next step to take and appreciate all your prayers too!
The boys continue to provide lots of joy and laughter every day...Kellen is Mr. Climber and loves to explore! Carson is walking more and more but still prefers to have a hand to hold. He is also continuing to taste more and more food and is trying small sips of liquid. This is an awesome improvement!!
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| Headed out to play... |
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| I'm happy doing ANYTHING outside! |
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| Sweet giggles! |
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| Can you see my hair blowing in the wind : ) |
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| Daddy is getting some sugars!!! |
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| Pure joy! |
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| "Check out these flowers!" |
Monday, April 8, 2013
Next surgery scheduled
We have scheduled Carson's next surgery. It will be done in St. Louis at Cardinal Glennon. He will have a tonsillectomy & adenoidectomy (T&A) on May 20th. He will stay one night in the hospital and hopefully come home the next day. Please start praying now for a quick recovery. The ENT nurse said the recovery from this surgery can be rough...it is like have strep throat for two weeks. In alot of ways, this is one time his trach & G-tube come in handy because we do not have to be concerned about inflammation in his airway or lack of wanting to eat due to pain because we can pump fluids in through his G-tube. However, because he doesn't eat/drink by mouth we will have a difficult time provided relief through drinks (by mouth) to keep his mouth moist. Like I said, I am just praying for as quick a recovery as possible.
We now believe there is granulation tissue growing around his G-tube. This is a somewhat common problem and caused by the frequent friction and irritation of having a tube (a 'foreign object') in a surgical hole. We will go for a follow up appointment with his G-tube on April 17th. Maybe we will get some new ideas on how to treat it.
The boys got a little bug over Easter, so we have been laying low this past week. Both boys seem to be on the mend but still have congestion & increased secretions. Praying they recover fully from this soon, so we can get outside and enjoy the spring weather more.
We had a wonderful weekend...my family (Mom, Dad, Mems, Sarah, Josh, and James) all made the trip to Dexter to celebrate a late Easter! It was FANTASTIC! And Preston and I also got a night away...it is ALWAYS wonderful to catch up on a little sleep.
Here are several pictures of this past weekend...
We now believe there is granulation tissue growing around his G-tube. This is a somewhat common problem and caused by the frequent friction and irritation of having a tube (a 'foreign object') in a surgical hole. We will go for a follow up appointment with his G-tube on April 17th. Maybe we will get some new ideas on how to treat it.
The boys got a little bug over Easter, so we have been laying low this past week. Both boys seem to be on the mend but still have congestion & increased secretions. Praying they recover fully from this soon, so we can get outside and enjoy the spring weather more.
We had a wonderful weekend...my family (Mom, Dad, Mems, Sarah, Josh, and James) all made the trip to Dexter to celebrate a late Easter! It was FANTASTIC! And Preston and I also got a night away...it is ALWAYS wonderful to catch up on a little sleep.
Here are several pictures of this past weekend...
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| They LOVE having their clothes off : ) |
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| Helping Nana sew : ) |
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| Carson though the would adjust the dial : ) |
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| Carson & Kellen both found their baskets but Kellen ditched his to come help with Carson's : ) |
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| Collecting his Hugs! |
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| Kellen thought he could get a bite out of Aunt Ra-ra (& he was right : ) |
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| Some of our Easter hunting crew |
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| ...and again, Kellen thought he should come over to help. |
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| It's a cowboy boot, piggy bank : ) |
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| Giving sweet, sweet hugs to Poppy |
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| The LR Wildcat crew (we are just missing Kellen) |
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| Our walking crew THIS time! |
Sunday, March 31, 2013
Easter!
Happy Easter to everyone...we are SO glad to have a reason to celebrate and the hope of everlasting life! We had a beautiful day in southeast MO...Spring is coming!
We started out with a couple firsts....the first trip to church with the boys (this was the first time that the boys have been healthy enough and with flu season winding down). They actually did really well and only got loud a couple times, which was caused by a 'disagreement' on who should have which toy. It was wonderful to be back in church too! Then Carson experienced his first Walmart excursion : ) ....he definitely took it all in with wide eyes.
This afternoon and evening was filled with Easter egg hunts (two of them) and yummy food at Mimi & Papa's. Here are a few pictures...
P.S. Carson G-tube seems to be slightly better...still no leaking & no more puking! Praise God! We will be setting up follow up appointments in the next couple weeks. Thanks for the prayers!
We started out with a couple firsts....the first trip to church with the boys (this was the first time that the boys have been healthy enough and with flu season winding down). They actually did really well and only got loud a couple times, which was caused by a 'disagreement' on who should have which toy. It was wonderful to be back in church too! Then Carson experienced his first Walmart excursion : ) ....he definitely took it all in with wide eyes.
This afternoon and evening was filled with Easter egg hunts (two of them) and yummy food at Mimi & Papa's. Here are a few pictures...
P.S. Carson G-tube seems to be slightly better...still no leaking & no more puking! Praise God! We will be setting up follow up appointments in the next couple weeks. Thanks for the prayers!
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| Carson is off to find some eggs (he is high steppin') |
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| He found some : ) |
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| Kellen is surveying the yard... |
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| ...and he is off!! |
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| Now a timeout for the cat. |
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| The egg hunting crew! |
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| Cousins! |
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| Hamming it up! |
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| Now for the second hunt! |
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| I think he spotted another one... |
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| These had candy in them & Kellen found a Cadbury egg... |
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| ...and he liked it (take note of the drool : ) LOL |
Friday, March 29, 2013
More good stuff...
We have continued to do well at home...Carson is doing really well, appears to be gaining some of the weight back, has only thrown up 3x since we've been home (which two of those times were somewhat induced by us - on accident), he continues to willingly put food in his mouth (still not eating any volume but tasting ALOT more!), and the pathology report came back on the small mass they removed just below his trach. It WAS a hemangioma...so NOT residual teratoma, which was GREAT NEWS!
Please do be praying for his G-tube site. Although it is not leaking anymore, it is not healing like I would like to see. We have tried a couple different things to get it to heal but so far, really no luck. It has an area that I believe is skin breakdown but the spot it is in, is difficult to dress or treat with anything.
Kellen is doing really well...eating more and more and is in to EVERYTHING! He is SO passionate about life : ) The boys have also been interacting more and more...giving hugs randomly, helping each other out, sharing, or NOT sharing, occasionally pushing, pulling, and hitting but still everything that is NORMAL (such a wonderful word : )
We have been able to play outside the last three days and the boys just LOVE it! Looking forward to the spring weather and more time outside!
Other things that we could use prayer for is in deciding whether or not to pursue a surgery for Carson's slow gastric (stomach) emptying or look elsewhere for possible treatment. Since he isn't throwing up anymore, I have a really hard time willingly putting him through ANOTHER abdominal surgery. However, the surgeon said a G-button (the lower profile tube) may never work as long as he has a problem with emptying his stomach. Decisions, decisions....
Much thanks to everyone for the prayers...I'm waiting expectantly for an Easter miracle with his G-tube : ) Happy Easter to everyone!
Please do be praying for his G-tube site. Although it is not leaking anymore, it is not healing like I would like to see. We have tried a couple different things to get it to heal but so far, really no luck. It has an area that I believe is skin breakdown but the spot it is in, is difficult to dress or treat with anything.
Kellen is doing really well...eating more and more and is in to EVERYTHING! He is SO passionate about life : ) The boys have also been interacting more and more...giving hugs randomly, helping each other out, sharing, or NOT sharing, occasionally pushing, pulling, and hitting but still everything that is NORMAL (such a wonderful word : )
We have been able to play outside the last three days and the boys just LOVE it! Looking forward to the spring weather and more time outside!
Other things that we could use prayer for is in deciding whether or not to pursue a surgery for Carson's slow gastric (stomach) emptying or look elsewhere for possible treatment. Since he isn't throwing up anymore, I have a really hard time willingly putting him through ANOTHER abdominal surgery. However, the surgeon said a G-button (the lower profile tube) may never work as long as he has a problem with emptying his stomach. Decisions, decisions....
Much thanks to everyone for the prayers...I'm waiting expectantly for an Easter miracle with his G-tube : ) Happy Easter to everyone!
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| LOVING the wagon ride! |
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| Carson is supposed to be asleep but he is talking and playing instead : ) |
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| Kellen worked really hard to pull Carson on the horse! SO funny! |
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| Part of our Easter egg coloring crew! (Mimi hasn't been feeling good so she is sporting the new look : ) |
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| Carson's turn... |
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| ...and his response after the applause was TOO much for him. |
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| "Ooooooo!" Kellen was SO excited about dropping the eggs in... |
Saturday, March 23, 2013
Update from Dexter
Well, we have been home for 48 hours and so far, so good overall. Carson has only thrown up one time...this seems easy compared to what he was doing. I'm just praying that he can continue to keep the majority of his feedings down because he has lost a significant amount of weight (& no wonder because he didn't eat for almost a week)...you can tell it in his legs, face, hands, & feet : ( But he is SO happy to be home and be with Kellen. And I think Kellen is ecstatic to have Carson home too!
Another praise and I'm still somewhat speechless...Carson has started WANTING to put food (well, anything) in his mouth! This means we have to watch him very carefully because he tries to eat whole bites of things (puffs, french fries, toast, grilled cheese, strawberries, etc.) and he doesn't know what to do with it once he takes a bite. I think it may have something to do with getting more teeth & just wanting something to bite on but I'm not complaining! He has done better the last couple days with drops of liquid, yogurt, or baby food in his mouth. I don't think that this stage will necessarily last but it is a comfort to know that he can manage small amounts when HE wants to.
Sarah did a good job updating along the way...please continue to pray for healing of Carson's g-tube site...his current site doesn't look as good as the one from Cincinnati (St. Louis had to revise the stoma when they reduced the hernia). It has a small area of reddened skin that isn't as tight around the tube. The nurses said it should heal but I'm never too confident when it comes to Carson's g-tubes :/ The day after we returned home, the g-tube was leaking. 'Are you kidding me?!?!'...this what we had surgery for in the first place. We tightened the g-tube up & since then, it seems to be doing better but who knows! I just don't want these surgeries to be pointless! And then secondly, please pray for guidance for us...to know what steps to take with this new information we received from our latest stay in St. Louis (the possible damage to the vagal nerve that is effecting his gastric emptying). Should we do another surgery to attempt to improve the speed at which Carson's stomach empties or should we look into other options? What the surgeon said made sense, yet I just hate to put Carson through ANOTHER abdominal surgery, with ANOTHER incision, and ALL the risks that come with any surgery.
Thanks again for all the prayers along the way! It seemed like such a LONG week but I know that is nothing compared to what some families are going through or have gone through. We are so glad to be home and back to our normal schedules!
Another praise and I'm still somewhat speechless...Carson has started WANTING to put food (well, anything) in his mouth! This means we have to watch him very carefully because he tries to eat whole bites of things (puffs, french fries, toast, grilled cheese, strawberries, etc.) and he doesn't know what to do with it once he takes a bite. I think it may have something to do with getting more teeth & just wanting something to bite on but I'm not complaining! He has done better the last couple days with drops of liquid, yogurt, or baby food in his mouth. I don't think that this stage will necessarily last but it is a comfort to know that he can manage small amounts when HE wants to.
Sarah did a good job updating along the way...please continue to pray for healing of Carson's g-tube site...his current site doesn't look as good as the one from Cincinnati (St. Louis had to revise the stoma when they reduced the hernia). It has a small area of reddened skin that isn't as tight around the tube. The nurses said it should heal but I'm never too confident when it comes to Carson's g-tubes :/ The day after we returned home, the g-tube was leaking. 'Are you kidding me?!?!'...this what we had surgery for in the first place. We tightened the g-tube up & since then, it seems to be doing better but who knows! I just don't want these surgeries to be pointless! And then secondly, please pray for guidance for us...to know what steps to take with this new information we received from our latest stay in St. Louis (the possible damage to the vagal nerve that is effecting his gastric emptying). Should we do another surgery to attempt to improve the speed at which Carson's stomach empties or should we look into other options? What the surgeon said made sense, yet I just hate to put Carson through ANOTHER abdominal surgery, with ANOTHER incision, and ALL the risks that come with any surgery.
Thanks again for all the prayers along the way! It seemed like such a LONG week but I know that is nothing compared to what some families are going through or have gone through. We are so glad to be home and back to our normal schedules!
Thursday, March 21, 2013
Good news
Carson gets to go home!!! Praise Jesus : ) They do believe we have found another area the teratoma damaged and believe the slow emptying of his stomach is due in part to the teratoma's affect. His vagal nerve probably was damaged from the teratoma and so his sphincter in this stomach is not opening properly, so it does not let food pass out of his stomach as fast as it should. Babies should empty their stomach about 1 hour after eating and Carson takes over 4 hours to empty his stomach which is unusual. This isn't an urgent problem, but the doctors will be monitoring and determine what steps to take in the future. The plan now is to carry his puke bowl around and just get really good at catching puke : ), which Liz and Preston are already professionals. For now, Carson is super excited to go home and get uninterrupted sleep and Kellen can't wait to have his mommy, daddy, and buddy home. Thank you all for your prayers. We are eternally grateful.
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