This is just a quick little note to update everyone on the process of Eli's trip to Baylor.
At the evaluation, it was recommended that Eli have another Endoscopy and Biopsy done to test for EE (Eosinophilic Esophagitis) (http://www.eosinophilicesophagitishome.org/). We've been calling every day for the past several weeks to see if Eli's GI doctor had received the needed paperwork from Baylor to schedule this procedure. Currently, Baylor does not have a pediatric GI doctor on staff, so getting all the information together to send to the doctor here in Lubbock has taken quite a while.
Well, yesterday, I FINALLY received the phone call I've been waiting for!!! The GI doctor's nurse called to tell us that they had received the paperwork and were ready to schedule! So Eli has a consultation scheduled for Tuesday, June 5 to discuss the procedure and have a pre-op check-up. Then we will go to the hospital at 6:30 am the next day, Wednesday, June 6 to have the Endoscopy and biopsies done.
Depending on the results of the biopsies (and lots of hoping that Eli does NOT have EE) we will be able to make further plans of checking in to the inpatient program at Baylor. At this point, we are thinking it will be August before we are able to go, as it may be too late to start in June and all the July slots are currently full. But, we're getting there!!! We do just ask that you please continue to keep Eli in your prayers during his procedure. It's never an easy thing to see your little child being put under anesthesia... or to have them wake up from it so scared. Please pray for comfort for him and patience for me!
On one final note, I'd like to remind everyone about the fundraising we are working on. Information for "chances", as well as for the Golf Scramble are discussed in a previous blog. We truly appreciate all the kind words of encouragement, prayers and donations that have been sent our way. Thank you all SO much for thinking of our little guy!
Thursday, May 31, 2012
Thursday, May 24, 2012
Fundraising....
Now that the evaluation is behind us and we are one step closer to actually going to Our Children's House for treatment, we are able to move ahead with more fundraising. As I mentioned in an earlier blog entry, we are selling 'chances' to win several different items/packages. The drawing will be done on Saturday, June 23. We are still working to decide on the location for this; so I will have updates for this as soon as possible. We're just working to narrow it down between two locations. We had also discussed having a benefit dinner. In all honesty, I just don't have the energy to organize this. Once we started looking at all the details of a benefit dinner, I became too overwhelmed.... So we're just sticking with selling chances. Below, you will find all the details to the five separate packages we are selling chances for.
All tickets are $5 each or 5 tickets for $20. You can mix-and-match on the packages and you do NOT have to be present to win. We will notify you by phone if you are a winner.
1. Twin-on-twin Custom made bunk bed donated by Elite Mill Works, elitemillworks@gmail.com,
806-441-0039
Valued at $299.99 + Mattresses
2. Milwaukee Cordless Tool Set valued at $300
3. Health and Beauty Package valued at $200
- $60 Complete Nutrition gift card
- $65 Massage gift card donated by Jan Belli, Licensed Massage Therapist located inside Lubbock Hand Therapy
- $75 Ulta gift card
4. "Ladies"Package valued at $175
- $60 Scentsy gift basket donated by Deborah Baremore, Scensty Consultant
- $50 Melt gift card donated by Brent Murray
- $65 Massage gift card donated by Jan Belli, Licensed Massage Therapist located inside Lubbock Hand Therapy
5. Date Night Package valued at $150
- $25 Chili's gift card
- $50 Spoonful gift card donated by Kevin DeVore and Spoonful
- $50 Melt gift card donated by Brent Murray
- $30 Cinemark gift card
If you are interested in purchasing chances, there are several options:
*If you are located in Snyder or the surrounding area, my Mom, Cindy Hanes, and Step-Dad, Dave Hanes, both have ticket packets and can assist you in purchasing chances.
*If you live in Lubbock or the surrounding area, you can contact me via email at rrouse8253@lcu.edu, by phone at 806-438-8919, or via Facebook to arrange purchasing chances.
*If you live further away and are still interested in purchasing chances, this gets a bit trickier.... The best way I can think to do this is through email and mail. Simply email me a list of items you would like to purchase chances for. Then I will confirm the total amount due. You will then need to mail me a check or money order made out to "Eli's Baylor Fund". Once I receive payment, I will mail you a receipt and your ticket stubs.
Also, please remember that our friend, Brent Murray of Melt and Kong's, is also hosting a benefit Golf Scramble for Eli. It will be Monday, July 9. All the information is in the post below.
Thank you so much to each of you for your love and support. Also a BIG thank you to everyone who has made donations. We truly appreciate it!!
All tickets are $5 each or 5 tickets for $20. You can mix-and-match on the packages and you do NOT have to be present to win. We will notify you by phone if you are a winner.
1. Twin-on-twin Custom made bunk bed donated by Elite Mill Works, elitemillworks@gmail.com,
806-441-0039
Valued at $299.99 + Mattresses
2. Milwaukee Cordless Tool Set valued at $300
3. Health and Beauty Package valued at $200
- $60 Complete Nutrition gift card
- $65 Massage gift card donated by Jan Belli, Licensed Massage Therapist located inside Lubbock Hand Therapy
- $75 Ulta gift card
4. "Ladies"Package valued at $175
- $60 Scentsy gift basket donated by Deborah Baremore, Scensty Consultant
- $50 Melt gift card donated by Brent Murray
- $65 Massage gift card donated by Jan Belli, Licensed Massage Therapist located inside Lubbock Hand Therapy
5. Date Night Package valued at $150
- $25 Chili's gift card
- $50 Spoonful gift card donated by Kevin DeVore and Spoonful
- $50 Melt gift card donated by Brent Murray
- $30 Cinemark gift card
If you are interested in purchasing chances, there are several options:
*If you are located in Snyder or the surrounding area, my Mom, Cindy Hanes, and Step-Dad, Dave Hanes, both have ticket packets and can assist you in purchasing chances.
*If you live in Lubbock or the surrounding area, you can contact me via email at rrouse8253@lcu.edu, by phone at 806-438-8919, or via Facebook to arrange purchasing chances.
*If you live further away and are still interested in purchasing chances, this gets a bit trickier.... The best way I can think to do this is through email and mail. Simply email me a list of items you would like to purchase chances for. Then I will confirm the total amount due. You will then need to mail me a check or money order made out to "Eli's Baylor Fund". Once I receive payment, I will mail you a receipt and your ticket stubs.
Also, please remember that our friend, Brent Murray of Melt and Kong's, is also hosting a benefit Golf Scramble for Eli. It will be Monday, July 9. All the information is in the post below.
Thank you so much to each of you for your love and support. Also a BIG thank you to everyone who has made donations. We truly appreciate it!!
Sunday, May 20, 2012
Evaluation
We made the trip to Dallas this past Thursday, Friday and Saturday for Eli's evaluation at Our Children's House at Baylor. I have to say I am very impressed. We arrived for our evaluation, were taken to a room, and everyone came in like clock-work to do their part in observing, interviewing and evaluating. Below is what was stated in the Outpatient Feeding Assessment Recommendations we received following his evaluation. Much of it is direct quotes from the recommendations by the various individuals we met with.
First, we met with the Speech Language Pathologist. She observed that Eli demonstrates "atypical aversive behavioral responses to touch of food and non-food items" and noted that he does "demonstrate oral phase dysphagia secondary to moderately dysfunctional oral motor feeding skills". She has recommended feeding therapy 4 times a week for 60 minute sessions. She also stated that "behavioral signs and/or symptoms of possible aspiration warrants a recommendation for a referral for a modified barium swallow study (MBSS) as oral intake increases to be able to participate.
Second, we met with the Occupational Therapist. She has recommended occupational therapy "2-4 times a week to address sensory modulation difficulties in relation to feeding". She also stated that Eli "presents with maximal aversive behaviors with presentation of food textures". However, we were very surprised when Eli touched shaving cream during his evaluation/"play" time with the occupational therapist. This is something new for him and is was very exciting!!
Third, we met with the Psychologist. She was able to discuss Eli's aversive responses to food, stating that these behaviors are secondary to his "oral-motor and sensory processing difficulties". She also discussed the use of behavior modification strategies during meals" and has recommended weekly consultation during Eli's treatment.
Last, we met with the Dietitian/Nutritionist. He has recommended to continue with Eli's normal schedule of tube feedings. He weighed Eli and measured his height. He said that Eli is currently at a great weight, but understand that this is mainly because of the tube feedings; he suggested some options of adding things to his milk and yogurt to add calories.
The final recommendation from the "team" is that Eli appears to be an appropriate candidate for an intensive feeding program at Our Children's House. The overall goal of the program is to provide intensive individual treatment and caregiver training to address oral-motor, sensory processing and behavioral deficits that are interfering with oral intake.
They have also recommended a consultation with Eli's GI doctor. Due to the symptoms that we described, they want to make sure that Eli does not have Eosinophilic Esophagitis (or EE for short). This is basically an allergy to food. However, it is internal and does not show up on normal blood work or scratch testing for allergies. The only way to determine if he has EE is to do Endoscopy and biopsy portions of Eli's esophagus. This will need to be done before Eli enters the program at Baylor. Basically, if Eli DOES have EE, the program at Baylor will not work if the EE is untreated. So, we have called Eli's GI doctor requesting that the scope be done as soon as possible. For more information on EE, you can visit http://www.eosinophilicesophagitishome.org/. (Thanks, Mom, for finding this for me!)
This is where is gets tricky again..... Basically, Eli's GI doctor is frustrated because we are going elsewhere for treatment. They apparently want us to stay in Lubbock and continue with therapy. All of Eli's therapists in Lubbock have been wonderful..... But when we've been doing therapy here since October 2010 and nothing has changed (Eli has actually regressed) IT'S TIME TO TRY SOMETHING NEW!!!! The doctor, I guess, doesn't see it that way. So he's being a bit stubborn. I know what you're probably thinking... "Go to another doctor!" The problem with that is that there are only 2 pediatric GI doctors in Lubbock and they're partners. So, another doctor is out of the question, unless we decide to go to another town which will only delay getting the procedure done.
So, we're anxiously waiting for Monday morning to get here so we can contact the GI doctor again to see if he is going to do the procedure. While talking to the director of the program, she told us that there is an opening in the program in JUNE!!!! So, if we can get the procedure done ASAP and make sure that everything is squared away with Eli's insurance, we could be going into the program as soon as within a couple of weeks. However, if the procedure and insurance delay things, we will not be able to go until August, as all the July slots are full. So, now we wait! It seems like we've been doing a lot of that, but we are making progress! One more thing is checked off our list! So, whether it is in 2 weeks..... or in 6 weeks.... BAYLOR, HERE WE COME!!!!! =)
First, we met with the Speech Language Pathologist. She observed that Eli demonstrates "atypical aversive behavioral responses to touch of food and non-food items" and noted that he does "demonstrate oral phase dysphagia secondary to moderately dysfunctional oral motor feeding skills". She has recommended feeding therapy 4 times a week for 60 minute sessions. She also stated that "behavioral signs and/or symptoms of possible aspiration warrants a recommendation for a referral for a modified barium swallow study (MBSS) as oral intake increases to be able to participate.
Second, we met with the Occupational Therapist. She has recommended occupational therapy "2-4 times a week to address sensory modulation difficulties in relation to feeding". She also stated that Eli "presents with maximal aversive behaviors with presentation of food textures". However, we were very surprised when Eli touched shaving cream during his evaluation/"play" time with the occupational therapist. This is something new for him and is was very exciting!!
Third, we met with the Psychologist. She was able to discuss Eli's aversive responses to food, stating that these behaviors are secondary to his "oral-motor and sensory processing difficulties". She also discussed the use of behavior modification strategies during meals" and has recommended weekly consultation during Eli's treatment.
Last, we met with the Dietitian/Nutritionist. He has recommended to continue with Eli's normal schedule of tube feedings. He weighed Eli and measured his height. He said that Eli is currently at a great weight, but understand that this is mainly because of the tube feedings; he suggested some options of adding things to his milk and yogurt to add calories.
The final recommendation from the "team" is that Eli appears to be an appropriate candidate for an intensive feeding program at Our Children's House. The overall goal of the program is to provide intensive individual treatment and caregiver training to address oral-motor, sensory processing and behavioral deficits that are interfering with oral intake.
They have also recommended a consultation with Eli's GI doctor. Due to the symptoms that we described, they want to make sure that Eli does not have Eosinophilic Esophagitis (or EE for short). This is basically an allergy to food. However, it is internal and does not show up on normal blood work or scratch testing for allergies. The only way to determine if he has EE is to do Endoscopy and biopsy portions of Eli's esophagus. This will need to be done before Eli enters the program at Baylor. Basically, if Eli DOES have EE, the program at Baylor will not work if the EE is untreated. So, we have called Eli's GI doctor requesting that the scope be done as soon as possible. For more information on EE, you can visit http://www.eosinophilicesophagitishome.org/. (Thanks, Mom, for finding this for me!)
This is where is gets tricky again..... Basically, Eli's GI doctor is frustrated because we are going elsewhere for treatment. They apparently want us to stay in Lubbock and continue with therapy. All of Eli's therapists in Lubbock have been wonderful..... But when we've been doing therapy here since October 2010 and nothing has changed (Eli has actually regressed) IT'S TIME TO TRY SOMETHING NEW!!!! The doctor, I guess, doesn't see it that way. So he's being a bit stubborn. I know what you're probably thinking... "Go to another doctor!" The problem with that is that there are only 2 pediatric GI doctors in Lubbock and they're partners. So, another doctor is out of the question, unless we decide to go to another town which will only delay getting the procedure done.
So, we're anxiously waiting for Monday morning to get here so we can contact the GI doctor again to see if he is going to do the procedure. While talking to the director of the program, she told us that there is an opening in the program in JUNE!!!! So, if we can get the procedure done ASAP and make sure that everything is squared away with Eli's insurance, we could be going into the program as soon as within a couple of weeks. However, if the procedure and insurance delay things, we will not be able to go until August, as all the July slots are full. So, now we wait! It seems like we've been doing a lot of that, but we are making progress! One more thing is checked off our list! So, whether it is in 2 weeks..... or in 6 weeks.... BAYLOR, HERE WE COME!!!!! =)
Sunday, May 13, 2012
So Much to do...
I am happy to say that on Friday, May 4, 2012, I walked across that stage and GRADUATED with my Masters in Counseling!!! I am so very excited and looking forward to this next part of my life. Unfortunately, however, graduating from college has not meant more time to relax or work on my many projects. It seems that I've actually been MORE busy these past few weeks. Now, on top of preparing for Baylor and working on benefits and fundraisers, I am faced with the daunting task of starting paperwork for my LPC Internship License. But, one thing at a time....
Eli's evaluation is quickly approaching. We will leave this Thursday to go to Dallas for Eli's evaluation at Baylor on Friday. Adam and I have already begun making our VERY long list of questions to ask while there. We've also started making the long list of items we need to be sure to pack and take with us to Baylor for while we are there for treatment. For the first two weeks, I will not be able to be involved in Eli's treatment. So, there will be a time of about 5 hours a day that I will be on my own.... talk about NERVES!! Parents are encouraged to leave the hospital during this time, but I can honestly say that I do NOT feel comfortable with doing that just yet. I'm sure it will take me a few days of being there to feel okay with leaving Eli. Fortunately, I have been reading the blog of another mom whose son has already gone through the program there. While I'm glad to have a bit of a "heads up" about the program, it was also a swift kick of reality. I am hopeful that the evaluation will calm some of my fears, as well as help us to better prepare for the actual treatment. It is at this time that we will also find out the definite date we will return for treatment. We've been told that some parents have been asked to return within a matter of days to begin treatment.... or a month and a half away from the time of evaluation.
I preparation for the treatment and the time we will be in Dallas, we are FINALLY setting plans in stone for fundraisers and benefits. Previously, we had discussed having a sit-down benefit brisket dinner. Adam and I talked the other night, and decided to just do a brisket sale. We, along with a BIG help from our friend Dee, will smoke briskets and sell them at a set price. We will do mainly pre-sale briskets, but will also have a few extras for sale. Then we will have a set time, date and location for pick-up. At this point, we are looking at Saturday, June 23. Also, we will have the raffle at this time. I will be finishing up everything on Monday for the raffle items, so we can start selling those tickets by the end of the week. Adam and I will have raffle tickets, as well as order forms for briskets. Some family and friends will also occasionally have packets with raffle tickets and brisket order forms. Once I have completed information on the raffle items, I will post those for everyone to see. If you are interested in buying raffle tickets or briskets, you can always feel free to contact me.
Then, of course we have the golf scramble coming up on July 9. I've posted that information in my previous post.
Lastly, I have had several people ask about making donations to Eli's account at City Bank. City Bank is mainly located in Lubbock and the surrounding counties. If you would like to make a donation to Eli's account, that can be done by mailing a check directly to the bank. The address is 3251 50th Street, Lubbock, Texas 79413. Please be sure to note the Account name: Eli's Baylor fund, as well as the Account number: 31274007.
We also continue to ask for prayers during this time of preparation, as well as during the time of the actual treatment. While we know that this is what is best for Eli and are hopeful for a favorable outcome, it is still scary to think about being away from home for 2 months, as well as away from Adam for a week at a time as he will mainly come to Dallas on weekends. We will definitely be needing prayers for strength, comfort and patience during this time.
Eli's evaluation is quickly approaching. We will leave this Thursday to go to Dallas for Eli's evaluation at Baylor on Friday. Adam and I have already begun making our VERY long list of questions to ask while there. We've also started making the long list of items we need to be sure to pack and take with us to Baylor for while we are there for treatment. For the first two weeks, I will not be able to be involved in Eli's treatment. So, there will be a time of about 5 hours a day that I will be on my own.... talk about NERVES!! Parents are encouraged to leave the hospital during this time, but I can honestly say that I do NOT feel comfortable with doing that just yet. I'm sure it will take me a few days of being there to feel okay with leaving Eli. Fortunately, I have been reading the blog of another mom whose son has already gone through the program there. While I'm glad to have a bit of a "heads up" about the program, it was also a swift kick of reality. I am hopeful that the evaluation will calm some of my fears, as well as help us to better prepare for the actual treatment. It is at this time that we will also find out the definite date we will return for treatment. We've been told that some parents have been asked to return within a matter of days to begin treatment.... or a month and a half away from the time of evaluation.
I preparation for the treatment and the time we will be in Dallas, we are FINALLY setting plans in stone for fundraisers and benefits. Previously, we had discussed having a sit-down benefit brisket dinner. Adam and I talked the other night, and decided to just do a brisket sale. We, along with a BIG help from our friend Dee, will smoke briskets and sell them at a set price. We will do mainly pre-sale briskets, but will also have a few extras for sale. Then we will have a set time, date and location for pick-up. At this point, we are looking at Saturday, June 23. Also, we will have the raffle at this time. I will be finishing up everything on Monday for the raffle items, so we can start selling those tickets by the end of the week. Adam and I will have raffle tickets, as well as order forms for briskets. Some family and friends will also occasionally have packets with raffle tickets and brisket order forms. Once I have completed information on the raffle items, I will post those for everyone to see. If you are interested in buying raffle tickets or briskets, you can always feel free to contact me.
Then, of course we have the golf scramble coming up on July 9. I've posted that information in my previous post.
Lastly, I have had several people ask about making donations to Eli's account at City Bank. City Bank is mainly located in Lubbock and the surrounding counties. If you would like to make a donation to Eli's account, that can be done by mailing a check directly to the bank. The address is 3251 50th Street, Lubbock, Texas 79413. Please be sure to note the Account name: Eli's Baylor fund, as well as the Account number: 31274007.
We also continue to ask for prayers during this time of preparation, as well as during the time of the actual treatment. While we know that this is what is best for Eli and are hopeful for a favorable outcome, it is still scary to think about being away from home for 2 months, as well as away from Adam for a week at a time as he will mainly come to Dallas on weekends. We will definitely be needing prayers for strength, comfort and patience during this time.
Tuesday, May 8, 2012
Generosity and Kindness
In preparing for Eli's trip to Baylor, Adam and I have been a bit stressed when thinking about the financial side of things. In a previous post, I mentioned a benefit dinner and raffle that Adam and I were trying to put together. I also briefly mentioned a charity golf tournament that our friend Brent was hosting. Well, plans have been made, posters and fliers printed, and the day of the tournament is approaching. So, I wanted to take a minute to, first, thank Brent for his generosity and kindness.
When I first called Brent several weeks ago, it was to tell him about the raffle Adam and I were organizing. Brent owns Melt Restaurant and Bar, as well as Kong's, here in Lubbock. Melt is a great place to eat, so I wanted to ask Brent if he would be willing to donate a gift certificate from Melt for us to raffle off. I did not expect him to offer two $50 gift certificates! After Brent made this offer, he began asking about the raffle and benefit dinner. Then he said, "Well, Melt began hosting a charity golf scramble last year. We're getting ready for this year's scramble, but I haven't chosen a charity yet. How about we make Eli our charity?" I was stunned. I just didn't know what to say! I think I somehow managed to utter the word "YES!". Brent and I have met several times since then to discuss dates, information, etc. concerning the scramble. Each time we meet, I become more and more excited about the tournament! So many people have voiced interest in forming a team or sponsoring a hole. To all those who have asked for information and/or registered, thank you so much! For others who may be interested, below is a copy of the poster with all the information you could need. If you have any questions, please feel free to contact me! I also have brochures that can be mailed to anyone interested. It is scheduled for Monday, July 9, at Hillcrest Country Club. Registration and fajita lunch begin at 11:30 with a Shotgun Start at 1:00. Thank you in advance for your support and participation!
When I first called Brent several weeks ago, it was to tell him about the raffle Adam and I were organizing. Brent owns Melt Restaurant and Bar, as well as Kong's, here in Lubbock. Melt is a great place to eat, so I wanted to ask Brent if he would be willing to donate a gift certificate from Melt for us to raffle off. I did not expect him to offer two $50 gift certificates! After Brent made this offer, he began asking about the raffle and benefit dinner. Then he said, "Well, Melt began hosting a charity golf scramble last year. We're getting ready for this year's scramble, but I haven't chosen a charity yet. How about we make Eli our charity?" I was stunned. I just didn't know what to say! I think I somehow managed to utter the word "YES!". Brent and I have met several times since then to discuss dates, information, etc. concerning the scramble. Each time we meet, I become more and more excited about the tournament! So many people have voiced interest in forming a team or sponsoring a hole. To all those who have asked for information and/or registered, thank you so much! For others who may be interested, below is a copy of the poster with all the information you could need. If you have any questions, please feel free to contact me! I also have brochures that can be mailed to anyone interested. It is scheduled for Monday, July 9, at Hillcrest Country Club. Registration and fajita lunch begin at 11:30 with a Shotgun Start at 1:00. Thank you in advance for your support and participation!
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