Well, we had Eli's second scope and set of biopsies with Dr. Osuntokun done in Fort Worth at Cook Children's Hospital last month. I was very thankful that my mom was able to attend the appointment and procedure with me. It gave us some really good Mother-Daughter-Eli time! =) It seems like we don't get those opportunities near enough anymore!
I was also really excited that my mom got the opportunity to meet Dr. O and see the facilities at Cook Children's. That hospital is absolutely amazing!! The facilities, staff and amenities there are just fantastic! Mom was very impressed as well!
After Eli's procedure was done, Dr. O came out to visit with us. He said the erosion in Eli's esophagus was completely healed and he thought the esophagus itself looked very healthy. He was also able to change out Eli's G-tube while he was still sedated. Mom and I got a brief tutorial on this the day before at his appointment. We will definitely need to know how to do this in case of an emergency! Anyway, he went ahead and did the routine biopsies and said it would take 7-10 days to get the results back. However, the photos from the scope looked AMAZING!! I think this was the clearest Eli's little esophagus has ever looked!
So about 2 weeks after the procedure, we received the results of Eli's biopsies.... NO SIGN OF EOSINOPHILS!!! That is our second clean scope! We couldn't be happier about this! So, we are still slowly working on re-introducing foods to Eli. This is still a little difficult because there are some food items that we have to absolutely avoid.... and unfortunately, some of these things appear in practically EVERYTHING! Also, Eli is still on pureed, non-solid foods and those options are relatively limited. But, he's doing great! We are waiting for the doctor's office to call us back and schedule another round of appointments and procedures in mid-December or early January.
It makes my heart happy every time Eli comes to us and says, "I think I'm hungry!", then runs over to his cabinet and pours over his options, finding exactly what he want to snack on! It was a little upsetting the other day when he asked to drink a smoothie, one of the items that he absolutely can't have. He hasn't asked for or been offered one since August. To make matters worse, he was looking for a Popsicle in the freezer a few days ago and stumbled upon a frozen go-gurt that we forgot was in there. He came running to me with it in his hand saying, "Mommy! PLEASE I have this?!" It kind of broke my heart to have to explain to him that he wasn't able to have it because it would make his throat and tummy hurt and make him sick. (Note to self: double check fridge, freezer, and ALL cabinets for "forbidden"foods!)
On top of ALL this wonderful news.... we are VERY excited to announce a bit of more good news.... Two days before Eli was admitted to Our Children's House at Baylor, we were blessed to find out that we are expecting a second child! I am 17 weeks pregnant now and we have found out that Eli will be having a baby sister, expected April 12, 2013!! We are all very excited! Even Eli keeps telling us, "I can't WAIT to be a big brother!". He is already very loving toward his little sister, kissing my belly and hugging it every night before bed and asking endless questions about "baby". We do ask that you please continue to keep us in your prayers; Eli for continued healing and good reports, and me and baby for a healthy pregnancy and delivery!
Our little family is growing!!!
Thursday, November 8, 2012
Thursday, October 18, 2012
Another check-up
This past month and a half since returning from Our Children's House sure has been busy!! I am really loving my new job as the Family Advocate for the Children's Advocacy Center of the South Plains here in Lubbock. We have also moved Eli to a new Preschool/PDO four days a week. He really seems to be loving it there and he is doing so well! I continue to be surprised on a daily basis by the things he is learning and picking up! He is growing up too fast!
Eli, my mom and I just returned from Fort Worth where Eli had a check up with his new GI doctor, Dr. Osuntokun, at Cook Children's Hospital. I continue to be incredibly impressed with this place! My mom and I kept saying that we wondered how Eli would be now if we had come to Cook Children's in the first place, instead of two years after all of Eli's health issues began. Dr. Osuntokun is definitely an amazing doctor. He listens, answers all your questions, and is just a great person! I was impressed when, during the appointment, Eli was a bit resistant, but it didn't "bother" Dr. O. And when Eli began making noises (kind of motor-boating his lips), Dr. O mimicked the sounds back to Eli, without ever skipping a beat! And I was also very impressed that, while at a Specialty Hospital, we were in and out within 30 minutes of Eli's appointment time! When does that EVER happen?!
The next day was Eli's procedure at Cook Children's hospital. Eli had an upper GI scope, biopsies of his esophagus, and they changed out his G-button. The pictures from the scope were the clearest I have ever seen! We are very hopeful that the biopsies will come back clear. We expect to get those results any day now. We were concerned about the granulation tissue around Eli's G-button. Dr. O was going to cauterize it, but upon closer inspection during the procedure, he was able to see that it is not granulation tissue; it is actually scar tissue. He said that if he removed it now, it would be an open wound and would take quite a while to heal and that, for the moment, it is purely cosmetic.
We were in recovery with Eli for a while longer than expected, mainly because he had a hard time waking up from the anesthesia and had thrown up after they removed the breathing tube. He had had some congestion for the past two weeks and his right lung was congested during the pre-op exam, so they also gave him a breathing treatment before we were discharged. The care they gave Eli was amazing; just one more thing that impresses me about this hospital and it's staff.
So, now we are just waiting for the biopsy results! Once we get those, we will schedule another appointment and possibly another scope. We expect this to be routine, every 2-3 months, for the next couple of years. We will see Dr. O regularly as follow-ups and to monitor Eli's GI health and G-button. GI scopes and biopsies will be scheduled and performed based on the previous scope and biopsy results. So, we'll just wait till we hear on these results and make plans from there. But we are anxious and excited to be able to introduce new foods to Eli and continue to watch him grow!
Eli, my mom and I just returned from Fort Worth where Eli had a check up with his new GI doctor, Dr. Osuntokun, at Cook Children's Hospital. I continue to be incredibly impressed with this place! My mom and I kept saying that we wondered how Eli would be now if we had come to Cook Children's in the first place, instead of two years after all of Eli's health issues began. Dr. Osuntokun is definitely an amazing doctor. He listens, answers all your questions, and is just a great person! I was impressed when, during the appointment, Eli was a bit resistant, but it didn't "bother" Dr. O. And when Eli began making noises (kind of motor-boating his lips), Dr. O mimicked the sounds back to Eli, without ever skipping a beat! And I was also very impressed that, while at a Specialty Hospital, we were in and out within 30 minutes of Eli's appointment time! When does that EVER happen?!
The next day was Eli's procedure at Cook Children's hospital. Eli had an upper GI scope, biopsies of his esophagus, and they changed out his G-button. The pictures from the scope were the clearest I have ever seen! We are very hopeful that the biopsies will come back clear. We expect to get those results any day now. We were concerned about the granulation tissue around Eli's G-button. Dr. O was going to cauterize it, but upon closer inspection during the procedure, he was able to see that it is not granulation tissue; it is actually scar tissue. He said that if he removed it now, it would be an open wound and would take quite a while to heal and that, for the moment, it is purely cosmetic.
We were in recovery with Eli for a while longer than expected, mainly because he had a hard time waking up from the anesthesia and had thrown up after they removed the breathing tube. He had had some congestion for the past two weeks and his right lung was congested during the pre-op exam, so they also gave him a breathing treatment before we were discharged. The care they gave Eli was amazing; just one more thing that impresses me about this hospital and it's staff.
So, now we are just waiting for the biopsy results! Once we get those, we will schedule another appointment and possibly another scope. We expect this to be routine, every 2-3 months, for the next couple of years. We will see Dr. O regularly as follow-ups and to monitor Eli's GI health and G-button. GI scopes and biopsies will be scheduled and performed based on the previous scope and biopsy results. So, we'll just wait till we hear on these results and make plans from there. But we are anxious and excited to be able to introduce new foods to Eli and continue to watch him grow!
Monday, September 17, 2012
OCH: Week Four
WOW! I feel terrible that it has taken me this long to blog about our last week at our Children's House. After returning home, it was just a whirlwind of trying to get settled, get back into a routine and get ready for me to start my new job and Eli ready to start back to school! So FINALLY.... here is how our last week went...
Monday, August 27, 2012 - Eli tried mandarin oranges and steel cut oats today. He wasn't too sure he liked them. At his 4:30 meal, we had a minor set-back. One of his black beans was not blended; he threw up everything he ate as soon as that bean touched his tongue. Unfortunately, during his weight check today, Eli has only gained one ounce during his stay here.
Tuesday, August 28, 2012 - I got to feed Eli alone this morning, without the therapist in the room! She watched from the observation room and said we're doing great!! Eli is scheduled for two speech therapies today. So I'm hoping that means they will finally be introducing another new food. I talked to Dr. Austin (the psychologist) today and she thinks we will get to go home on FRIDAY!!!!! I am so excited! I'm also sitting in on speech therapy now to learn how to introduce new foods and I will get to start learning how to make and prepare his foods soon! Eli ate too fast again and threw up his 1:30 feeding. Gotta slow it down a little more.... Eli ate 6 bites of blended creamed corn. We made sure he only got the liquid and no kernels, but he did great!!
Wednesday, August 29, 2012 - Eli had Quinoa Blended Gluten Free Oat Cereal with Mandarin oranges (all blended together) for breakfast. Then at speech therapy, I introduced NeoCate Nutra (tasteless yogurt/whipped cream consistency fluff) to Eli, as well as Cinnamon Apple Oatmeal baby food! We had our final care conference today. They suggested coming back in 6 months for the 5-week Day Program to work on feeding and chewing. This would be out patient. They said that once kids start eating, it normally takes about 3 years to master chewing. So since Eli is just starting.learning to eat, we can estimate that it may take 2-3 years before he is able to chew foods. They also said the corn was too high on his allergen/reaction list to introduce, so we're going to try carrots. They also suggested rice, tomato and potato, but to avoid dairy, soy, corn, wheat and (of course) egg. We scheduled an additional speech therapy today to pull the corn from Eli's diet and introduce the carrot. He seemed to like them! We will introduce chicken tomorrow!
Thursday, August 30, 2012 - ADAM FLIES IN TONIGHT!!!! YEAH!!! Eli ate blended Mandarin oranges and oatmeal for breakfast again today. He seemed to like it a little better. Then, while Eli was in occupational therapy, I learned how to prepare his foods for when we return home! Eli had blended green beans and NeoCate Nutra flavored with vanilla Elecare for lunch. I think the Nutra is going to be a great substitute for yogurt! We introduced CHICKEN in speech therapy!! It was blended with Hemp milk and Neocate Nutra. Eli actually seemed to like it! YAY! He had it again for dinner! About 8:30 tonight, Eli just told me, "Mom, I think I'm hungry!". he said he wanted applesauce, then he fed himself the ENTIRE CONTAINER!! YAY!!
Friday, August 31, 2012 - Eli had breakfast this morning and did wonderful!! We are all loaded up and headed home!!!!
Well, we've been home fore a couple of weeks now and things are still going really well. In a few days, I will try to sit down and blog an update from the past few weeks since we've been home. Thank you to everyone for being so patient with us as we re-adjust to normal life again! We also want to say another huge thank you to everyone who called, sent care packages and prayed for us while we were in Dallas. We can't thank you enough!
Monday, August 27, 2012 - Eli tried mandarin oranges and steel cut oats today. He wasn't too sure he liked them. At his 4:30 meal, we had a minor set-back. One of his black beans was not blended; he threw up everything he ate as soon as that bean touched his tongue. Unfortunately, during his weight check today, Eli has only gained one ounce during his stay here.
Tuesday, August 28, 2012 - I got to feed Eli alone this morning, without the therapist in the room! She watched from the observation room and said we're doing great!! Eli is scheduled for two speech therapies today. So I'm hoping that means they will finally be introducing another new food. I talked to Dr. Austin (the psychologist) today and she thinks we will get to go home on FRIDAY!!!!! I am so excited! I'm also sitting in on speech therapy now to learn how to introduce new foods and I will get to start learning how to make and prepare his foods soon! Eli ate too fast again and threw up his 1:30 feeding. Gotta slow it down a little more.... Eli ate 6 bites of blended creamed corn. We made sure he only got the liquid and no kernels, but he did great!!
Wednesday, August 29, 2012 - Eli had Quinoa Blended Gluten Free Oat Cereal with Mandarin oranges (all blended together) for breakfast. Then at speech therapy, I introduced NeoCate Nutra (tasteless yogurt/whipped cream consistency fluff) to Eli, as well as Cinnamon Apple Oatmeal baby food! We had our final care conference today. They suggested coming back in 6 months for the 5-week Day Program to work on feeding and chewing. This would be out patient. They said that once kids start eating, it normally takes about 3 years to master chewing. So since Eli is just starting.learning to eat, we can estimate that it may take 2-3 years before he is able to chew foods. They also said the corn was too high on his allergen/reaction list to introduce, so we're going to try carrots. They also suggested rice, tomato and potato, but to avoid dairy, soy, corn, wheat and (of course) egg. We scheduled an additional speech therapy today to pull the corn from Eli's diet and introduce the carrot. He seemed to like them! We will introduce chicken tomorrow!
Thursday, August 30, 2012 - ADAM FLIES IN TONIGHT!!!! YEAH!!! Eli ate blended Mandarin oranges and oatmeal for breakfast again today. He seemed to like it a little better. Then, while Eli was in occupational therapy, I learned how to prepare his foods for when we return home! Eli had blended green beans and NeoCate Nutra flavored with vanilla Elecare for lunch. I think the Nutra is going to be a great substitute for yogurt! We introduced CHICKEN in speech therapy!! It was blended with Hemp milk and Neocate Nutra. Eli actually seemed to like it! YAY! He had it again for dinner! About 8:30 tonight, Eli just told me, "Mom, I think I'm hungry!". he said he wanted applesauce, then he fed himself the ENTIRE CONTAINER!! YAY!!
Friday, August 31, 2012 - Eli had breakfast this morning and did wonderful!! We are all loaded up and headed home!!!!
Well, we've been home fore a couple of weeks now and things are still going really well. In a few days, I will try to sit down and blog an update from the past few weeks since we've been home. Thank you to everyone for being so patient with us as we re-adjust to normal life again! We also want to say another huge thank you to everyone who called, sent care packages and prayed for us while we were in Dallas. We can't thank you enough!
Monday, August 27, 2012
OCH: Week Three
WOW! Our third week at Our Children's House is over! We're in our final week!!! We have a Care Conference on Wednesday, August 29. They should give us our definite discharge date, but it should be Monday, September 3 unless something major happens. If anything, I'm hoping to get out a day or so early so we can have a few days at home to get settled. Crossing our fingers....
Monday, August 20, 2012 - I'm sitting in on all of Eli's feeds today, then I'll start feeding him tomorrow! Eli threw up again today after his 1:30 feeding. Just applesauce this time, no avocado. Adam surprised me by showing up a day early, so he was the one to get thrown up on this time! It was also great timing because he was able to help me and Eli get settled into our new room.
Tuesday, August 21, 2012 - We are all set for Eli's scope tomorrow. We have to be at Cook Children's in Ft. Worth at 6:00 AM!!!! It's going to be an early morning! I'm staying at Baylor Plaza Hotel tonight so hopefully I can get some rest. I also Skyped with Mom and Ryan a few days ago. Ryan told me about some dehydrated apple chips. I told Eli's SLP about them. She was able to buy some and introduced them today. Eli had a really hard time with them, but it's a start!
Wednesday, August 22, 2012 - We went to Cook Children's this morning for Eli's scope. The Eosinophilic Esophagitis is clear, but he has a yeast infection in his esophagus from the medication used to clear up the EE. So we're weaning off that medication and starting a new medication for the next 21 days to clear up the infection. Biopsies should be back in the next few days. Adam also got to feed Eli this afternoon and was very excited!! We talked to Christine with Dietary and Nutrition. Eli is getting about 800 calories during the day so they are cutting his nighttime tube feeds in half, stopping them after 5 hours and only doing 250 cc's. They think they will have him weaned from tube feeds before we leave OCH. Since this is Adam's last night in town, I'm staying at the hotel again and hoping to get LOTS of rest!
Thursday, August 23, 2012 - Adam has fed Eli ALL his feeds today! I'm so proud of how well Eli is doing and it has been such a huge help having Adam here the past few days. I was able to rest well the past 2 nights and am finally feeling better. I will start feeding Eli tomorrow. I'm anxious to also see if they've found any new foods for him.
Friday, August 24, 2012 - I got to feed Eli during his Feeding Therapy today for the first time! He's doing really well. I'm hoping they can find something for him to eat at breakfast other than just applesauce. During Speech Therapy today, Eli ate an apple chip! Dr. Oshutokun's office called today (the GI doctor from Cook Children's). They got the biopsies back and Eli's EE is RESOLVED!! However, there's significant erosion in his esophagus from the EE. So he's doubling the Prevacid dose. He also said that we can begin to re-introduce 1 new food every two weeks. He said to start with the lowest allergen reaction first. He also wants to re-scope in about 2 months. He's scheduled for an appointment on October 16 and scope and biopsies on October 17. Mom, Grandma and Pop came into town today for the weekend, I'm so excited to have them here.
Saturday, August 25, 2012 - Eli threw up during breakfast today. They are going to put him on Carafate to see if that will help.
Sunday, August 26, 2012 - Before Eli's last fe3ed today, he had a little breakdown. He started crying and said that he didn't want to go take his bites; he just wanted to go home. All I could do was hold him, cry with him and tell him that I wanted to go home too. I'm really frustrated that they haven't introduced any new foods in about 10+ days. This Momma's putting her foot down in the morning. We only have one week left and we need more progress!!
Things are starting to wrap up! I should be learning how to prepare food at the end of the week! So proud of Eli and the progress he has made! He is one tough, amazing little guy!! Please continue to send prayers our way as we go through our final week at Our Children's House and prepare to return home!!
Monday, August 20, 2012 - I'm sitting in on all of Eli's feeds today, then I'll start feeding him tomorrow! Eli threw up again today after his 1:30 feeding. Just applesauce this time, no avocado. Adam surprised me by showing up a day early, so he was the one to get thrown up on this time! It was also great timing because he was able to help me and Eli get settled into our new room.
Tuesday, August 21, 2012 - We are all set for Eli's scope tomorrow. We have to be at Cook Children's in Ft. Worth at 6:00 AM!!!! It's going to be an early morning! I'm staying at Baylor Plaza Hotel tonight so hopefully I can get some rest. I also Skyped with Mom and Ryan a few days ago. Ryan told me about some dehydrated apple chips. I told Eli's SLP about them. She was able to buy some and introduced them today. Eli had a really hard time with them, but it's a start!
Wednesday, August 22, 2012 - We went to Cook Children's this morning for Eli's scope. The Eosinophilic Esophagitis is clear, but he has a yeast infection in his esophagus from the medication used to clear up the EE. So we're weaning off that medication and starting a new medication for the next 21 days to clear up the infection. Biopsies should be back in the next few days. Adam also got to feed Eli this afternoon and was very excited!! We talked to Christine with Dietary and Nutrition. Eli is getting about 800 calories during the day so they are cutting his nighttime tube feeds in half, stopping them after 5 hours and only doing 250 cc's. They think they will have him weaned from tube feeds before we leave OCH. Since this is Adam's last night in town, I'm staying at the hotel again and hoping to get LOTS of rest!
Thursday, August 23, 2012 - Adam has fed Eli ALL his feeds today! I'm so proud of how well Eli is doing and it has been such a huge help having Adam here the past few days. I was able to rest well the past 2 nights and am finally feeling better. I will start feeding Eli tomorrow. I'm anxious to also see if they've found any new foods for him.
Friday, August 24, 2012 - I got to feed Eli during his Feeding Therapy today for the first time! He's doing really well. I'm hoping they can find something for him to eat at breakfast other than just applesauce. During Speech Therapy today, Eli ate an apple chip! Dr. Oshutokun's office called today (the GI doctor from Cook Children's). They got the biopsies back and Eli's EE is RESOLVED!! However, there's significant erosion in his esophagus from the EE. So he's doubling the Prevacid dose. He also said that we can begin to re-introduce 1 new food every two weeks. He said to start with the lowest allergen reaction first. He also wants to re-scope in about 2 months. He's scheduled for an appointment on October 16 and scope and biopsies on October 17. Mom, Grandma and Pop came into town today for the weekend, I'm so excited to have them here.
Saturday, August 25, 2012 - Eli threw up during breakfast today. They are going to put him on Carafate to see if that will help.
Sunday, August 26, 2012 - Before Eli's last fe3ed today, he had a little breakdown. He started crying and said that he didn't want to go take his bites; he just wanted to go home. All I could do was hold him, cry with him and tell him that I wanted to go home too. I'm really frustrated that they haven't introduced any new foods in about 10+ days. This Momma's putting her foot down in the morning. We only have one week left and we need more progress!!
Things are starting to wrap up! I should be learning how to prepare food at the end of the week! So proud of Eli and the progress he has made! He is one tough, amazing little guy!! Please continue to send prayers our way as we go through our final week at Our Children's House and prepare to return home!!
Wednesday, August 22, 2012
OCH: Week Two
Sorry this past week's update is a little late. I think my exhaustion is catching up with me....
So we've been in OCH for a little over two weeks now and Eli is making great progress. I'm a little short on time and trying to get to bed really early, so I'll just do a quick day-by-day update based off what I have written in my journal.
Monday, August 13 - Eli ate blenderized green beans and black beans in therapy today. They also want to try the Quinoa (grain) soon, as well as mandarin oranges.
Tuesday, August 14 - We saw Dr. Oshutokun (GI) at Cook Children's Hospital in Fort Worth today. We will be doing a scope next week. He thinks the feeding tube will be long term due to Eli's high number of allergies. He also said the egg allergy is very severe and he will be writing a prescription for an Epi-pen. We will come back for a follow-up in October. He is wanting to do food trials of 2-3 foods at a time and re-scope every 3 months to check for eosinophils (evidence of allergic reaction in the esophagus). We are very excited to finally be seeing a doctor who seems to know what he is talking about! Eli tried the quinoa today. He did okay with two bites, then gagged twice, so they stopped.
Wednesday, August 15 - Cook Children's called today. The facility where they scheduled Eli's scope for doesn't take his insurance. They rescheduled it for this next Wednesday at the main Cook's facility. Since Eli's scope was changed, Adam will fly in early Tuesday morning and fly back to Lubbock late Thursday. We had our Care Conference. They think Eli is progressing really well. I get to start observing Eli's feeding therapy this afternoon and through the weekend through a window, then start being in the room on Monday! I observed Eli in Feeding Therapy. It was AMAZING!! He ate applesauce and blenderized black beans and drank Elecare.
Thursday, August 16 - Eli ate a new food today.... Avocado blended with Elecare! We finally have a diagnosis for the little bumps Eli has; a minor staph infection.
Friday, August 17 - Nothing new today. I think Eli and I are both just exhausted..... And homesick. Eli has told me several times today that he misses Adam and wants to go home.
Saturday, August 18 - Eli tried pinto beans today. His Speech Therapist is going to try and find something other than beans for him to eat. It poured rain this afternoon and evening. We were in a flash flood warning for a while. Grey, sandy, STINKY stuff backed up into our sink in our room. They moved us to a new room temporarily until they can figure out where to move us for the remainder of our stay.
Sunday, August 19 - Nothing really new today. Weekends are pretty quiet. I'm so ready to get settled into our new room and for Adam to get here on Tuesday! My cousin Jana came to visit today. It was really good to see her and have some company. Plus she brought me chocolate! (You can't buy good candy in the vending machines here.) Then Eli came out of Feeding Therapy and threw up applesauce and avocado all over me.... Needless to say, Jana's visit was cut short.
So there is Week Two!!! Lots going on! I am finally resting better, so I plan to have Week Three's blog posted on Monday! Thank you so much to everyone who has called, texted, sent cards, sent packages, and sent prayers. We are very blessed to have such amazing family and friends surrounding us right now!!
So we've been in OCH for a little over two weeks now and Eli is making great progress. I'm a little short on time and trying to get to bed really early, so I'll just do a quick day-by-day update based off what I have written in my journal.
Monday, August 13 - Eli ate blenderized green beans and black beans in therapy today. They also want to try the Quinoa (grain) soon, as well as mandarin oranges.
Tuesday, August 14 - We saw Dr. Oshutokun (GI) at Cook Children's Hospital in Fort Worth today. We will be doing a scope next week. He thinks the feeding tube will be long term due to Eli's high number of allergies. He also said the egg allergy is very severe and he will be writing a prescription for an Epi-pen. We will come back for a follow-up in October. He is wanting to do food trials of 2-3 foods at a time and re-scope every 3 months to check for eosinophils (evidence of allergic reaction in the esophagus). We are very excited to finally be seeing a doctor who seems to know what he is talking about! Eli tried the quinoa today. He did okay with two bites, then gagged twice, so they stopped.
Wednesday, August 15 - Cook Children's called today. The facility where they scheduled Eli's scope for doesn't take his insurance. They rescheduled it for this next Wednesday at the main Cook's facility. Since Eli's scope was changed, Adam will fly in early Tuesday morning and fly back to Lubbock late Thursday. We had our Care Conference. They think Eli is progressing really well. I get to start observing Eli's feeding therapy this afternoon and through the weekend through a window, then start being in the room on Monday! I observed Eli in Feeding Therapy. It was AMAZING!! He ate applesauce and blenderized black beans and drank Elecare.
Thursday, August 16 - Eli ate a new food today.... Avocado blended with Elecare! We finally have a diagnosis for the little bumps Eli has; a minor staph infection.
Friday, August 17 - Nothing new today. I think Eli and I are both just exhausted..... And homesick. Eli has told me several times today that he misses Adam and wants to go home.
Saturday, August 18 - Eli tried pinto beans today. His Speech Therapist is going to try and find something other than beans for him to eat. It poured rain this afternoon and evening. We were in a flash flood warning for a while. Grey, sandy, STINKY stuff backed up into our sink in our room. They moved us to a new room temporarily until they can figure out where to move us for the remainder of our stay.
Sunday, August 19 - Nothing really new today. Weekends are pretty quiet. I'm so ready to get settled into our new room and for Adam to get here on Tuesday! My cousin Jana came to visit today. It was really good to see her and have some company. Plus she brought me chocolate! (You can't buy good candy in the vending machines here.) Then Eli came out of Feeding Therapy and threw up applesauce and avocado all over me.... Needless to say, Jana's visit was cut short.
So there is Week Two!!! Lots going on! I am finally resting better, so I plan to have Week Three's blog posted on Monday! Thank you so much to everyone who has called, texted, sent cards, sent packages, and sent prayers. We are very blessed to have such amazing family and friends surrounding us right now!!
Monday, August 13, 2012
OCH: Week 1
Well, Eli has been in the hospital at Our Children's House for one week now. We are finally more settled in to the routine now. The 7:30 am feeds are coming a bit easier and Eli actually told me today that he was hungry!!! We have our room all set up and it's pretty comfortable.
Ironically, Eli is sleeping on the queen-size air mattress and I'm in the hospital bed.... It's just more comfortable that way.
Eli has a pretty set schedule now. He has Feeding Therapy at 7:30 am, 11:00 am, 1:30 pm and 4:30 pm seven days a week, then Occupational Therapy at 9:30 am Monday-Friday, and Speech Therapy at 4:00 Monday-Friday. So far, feeding therapy is going really well! He has been eating applesauce now (about 3.5-4 ounces each time) and drinking Hemp milk in two sessions, then EleCare formula in 2 meals. We are working on transitioning completely to EleCare. This is what he is getting through his tube now, as well.
Eli actually ate some applesauce for us in the room a few nights ago!! This was the first time in about a year or more that he has actually eaten something other than go-gurt!!! We were SO excited!!!
Between therapies, Eli has been having a really good time playing. He has been riding his scooter through the halls, which he is really enjoying!
Bizzy, the music therapist also stopped by. Eli had a BLAST with this! He loved dancing!
They have a great outdoor area that has been really nice. We've been able to escape out there several times and enjoy some fresh air!!
This week will be pretty busy for us. Eli has his first appointment with the GI group at Cook Children's Hospital in Fort Worth. We are really excited about this and hopeful that they will agree to take Eli on as a patient. We had initially scheduled the appointment for a second opinion, but have since decided that we would prefer to find a new GI doctor, rather than keep the doctor in Lubbock.
We also have our first Care Conference on Wednesday. This is when we meet with the Psychologist, all the therapists, etc. to get feedback from them on how Eli is doing. We will also have the opportunity to ask them some questions.
There is a Parent's Lunch on Thursday that I am looking forward to. Supposedly, the food is really good! =) This is definitely something to be happy about!!!
Other than that, things seem to be going really well. Eli is making progress and we are very hopeful for GREAT things!
Thanks again for all the prayers and well wishes!
Oh, and I know several people are still asking for our address here at Our Children's House:
Elijah Rouse c/o
Our Children's House at Baylor
3301 Swiss Avenue, Room 121
Dallas, Texas 75204
Eli has a pretty set schedule now. He has Feeding Therapy at 7:30 am, 11:00 am, 1:30 pm and 4:30 pm seven days a week, then Occupational Therapy at 9:30 am Monday-Friday, and Speech Therapy at 4:00 Monday-Friday. So far, feeding therapy is going really well! He has been eating applesauce now (about 3.5-4 ounces each time) and drinking Hemp milk in two sessions, then EleCare formula in 2 meals. We are working on transitioning completely to EleCare. This is what he is getting through his tube now, as well.
Eli actually ate some applesauce for us in the room a few nights ago!! This was the first time in about a year or more that he has actually eaten something other than go-gurt!!! We were SO excited!!!
They introduce new foods in Speech Therapy before introducing them in Feeding Therapy. They are still waiting for some things to be delivered. They are having a bit of a difficult time finding things that Eli can eat. But they do currently have Quinoa (a grain) that Eli can eat, so they are planning on introducing that this afternoon.
I am really impressed with the care they are taking to make sure that Eli does not have contact with foods he is allergic to. They have bought him his own blender and utensils to make sure there is no cross-contamination. He even has his own, personal feeding room that none of the other kids are allowed to use. Very pleased with the care they are taking!!
Between therapies, Eli has been having a really good time playing. He has been riding his scooter through the halls, which he is really enjoying!
A youth group from Odessa came to town for a Rangers game, but stopped by to play with the kids. Eli loved playing with the playdoh with them.... and all the attention!
Bizzy, the music therapist also stopped by. Eli had a BLAST with this! He loved dancing!
They have a great outdoor area that has been really nice. We've been able to escape out there several times and enjoy some fresh air!!
This week will be pretty busy for us. Eli has his first appointment with the GI group at Cook Children's Hospital in Fort Worth. We are really excited about this and hopeful that they will agree to take Eli on as a patient. We had initially scheduled the appointment for a second opinion, but have since decided that we would prefer to find a new GI doctor, rather than keep the doctor in Lubbock.
We also have our first Care Conference on Wednesday. This is when we meet with the Psychologist, all the therapists, etc. to get feedback from them on how Eli is doing. We will also have the opportunity to ask them some questions.
There is a Parent's Lunch on Thursday that I am looking forward to. Supposedly, the food is really good! =) This is definitely something to be happy about!!!
Other than that, things seem to be going really well. Eli is making progress and we are very hopeful for GREAT things!
Thanks again for all the prayers and well wishes!
Oh, and I know several people are still asking for our address here at Our Children's House:
Elijah Rouse c/o
Our Children's House at Baylor
3301 Swiss Avenue, Room 121
Dallas, Texas 75204
Thursday, August 9, 2012
It's a good start...
Well, today is the day that Eli gets to start exploring foods in therapy. To this point, he has just been drinking his Hemp milk and trying the Elecare. Elecare is a hypoallergenic formula that Eli has been switched to for his tube feeds. He had previously been on Pediasure 1.5, but was allergic to it. Eli has mainly been on Hemp milk and Elecare until this point to "work him into the system". The "system" is he is not forced to take bites or drinks, but has the option to. He is on a timer, so whether or not he wants to eat or drink, he has to stay in the feeding room for the entire time. There are a few other rules that we will learn at a later time.
Anyway, today, he is getting to start with applesauce. New foods will always be introduced in Speech Therapy before being introduced into Feeding therapy. They have had a hard time finding foods for Eli due to his limited diet with allergies. They spent the past day and a half going over ingredients in the feeding room here at Our Children's House. They would think they had found a food he could eat.... then soy, corn syrup, or some other allergen would be an ingredient. They were finally able to find applesauce he was able to eat. The other foods they will be trying in his diet are: peaches, pears, avocado, green beans, chicken, turkey, black beans and pinto beans. They are still working to find a soup he can eat that does not contain allergens.
All of Eli's diet right now will be blenderized. They are buying him his own blender so that there will not be a risk of cross-contamination with the food the other kids eat. I'm very impressed with the care they are taking to make sure Eli is getting healthy, safe foods. They have also noticed that Eli has very weak jaw muscles. That is another reason why his diet will be purely blenderized for now. They are hoping his jaw muscles will strengthen, but also feel that it could be a very long time (if ever) before Eli starts to chew foods, considering he has really never chewed food.
But, we are at a GREAT starting point! I am so thankful that we are finally at Our Children's House where Eli is getting the treatment and therapy he needs! I have high hopes for the next 3 1/2 weeks!!!
Anyway, today, he is getting to start with applesauce. New foods will always be introduced in Speech Therapy before being introduced into Feeding therapy. They have had a hard time finding foods for Eli due to his limited diet with allergies. They spent the past day and a half going over ingredients in the feeding room here at Our Children's House. They would think they had found a food he could eat.... then soy, corn syrup, or some other allergen would be an ingredient. They were finally able to find applesauce he was able to eat. The other foods they will be trying in his diet are: peaches, pears, avocado, green beans, chicken, turkey, black beans and pinto beans. They are still working to find a soup he can eat that does not contain allergens.
All of Eli's diet right now will be blenderized. They are buying him his own blender so that there will not be a risk of cross-contamination with the food the other kids eat. I'm very impressed with the care they are taking to make sure Eli is getting healthy, safe foods. They have also noticed that Eli has very weak jaw muscles. That is another reason why his diet will be purely blenderized for now. They are hoping his jaw muscles will strengthen, but also feel that it could be a very long time (if ever) before Eli starts to chew foods, considering he has really never chewed food.
But, we are at a GREAT starting point! I am so thankful that we are finally at Our Children's House where Eli is getting the treatment and therapy he needs! I have high hopes for the next 3 1/2 weeks!!!
Tuesday, August 7, 2012
Getting settled in...
Well, we are starting to get settled in at Our Children's House. Eli has been very busy with therapy already today. He has had Feeding therapy (at 7:30 am!), Occupational Therapy and Speech therapy. He also has three more feeding sessions today, as well as physical therapy. We've seen the social worker, pediatrician, respiratory therapist AND had two labs drawn! Needless to say, it has been a very long day.
And since this is a hospital, nurses round every hour during the night. It has been a bit difficult for me because I am having to let go and step back to let the nurses do their jobs. They do Eli's tube feedings at night, administer all meds, etc.... All the stuff that I normally do.
But we are starting to get the room organized and learn our schedule and routine.
I think the hardest thing for Eli is that he is not allowed to drink or eat outside of his feeding sessions, except for after his final session for the day. Then he can eat and drink what he wants. He is only allowed 3 ounces of water between sessions, which is not much for him considering that he was drinking about 60-70+ ounces a day at home. But hopefully, after these first few days, he will be more in his routine and the drinking won't be such a big deal.
Everyone we have met has been incredibly nice. We feel very welcome and are just trying to settle in a bit. The bathroom situation is a little tough. I have a shared toilet with another family. Then my shower is actually in the playroom and shared with three other families. I do have a sink in my room.... so I may get really good about sticking my legs up in the sink to shave and washing my hair in the sink! I've also warned all family and friends that come to visit to just be prepared to watch Eli for a bit so I can go to their hotel and take a real shower!! =)
I haven't taken many pictures yet, but I will soon and will be posting them as I can. Several people have asked for our address to mail cards. We would actually REALLY appreciate this! I think we are definitely going to need some words of encouragement over this next month! The address is:
Elijah Rouse c/o Our Children's House at Baylor
3301 Swiss Avenue
Room 121
Dallas, Texas 75204
I was comforted some this morning when I realized that Eli's room number, 121, is my Dad's old badge number! Helped me to think that maybe it was a sign from God that He and my Dad are watching over us and things will work out!!
We want to say thank you to everyone who has prayed for us, sent us words of encouragement, etc. We definitely appreciate them!!
I think the hardest thing for Eli is that he is not allowed to drink or eat outside of his feeding sessions, except for after his final session for the day. Then he can eat and drink what he wants. He is only allowed 3 ounces of water between sessions, which is not much for him considering that he was drinking about 60-70+ ounces a day at home. But hopefully, after these first few days, he will be more in his routine and the drinking won't be such a big deal.
Everyone we have met has been incredibly nice. We feel very welcome and are just trying to settle in a bit. The bathroom situation is a little tough. I have a shared toilet with another family. Then my shower is actually in the playroom and shared with three other families. I do have a sink in my room.... so I may get really good about sticking my legs up in the sink to shave and washing my hair in the sink! I've also warned all family and friends that come to visit to just be prepared to watch Eli for a bit so I can go to their hotel and take a real shower!! =)
I haven't taken many pictures yet, but I will soon and will be posting them as I can. Several people have asked for our address to mail cards. We would actually REALLY appreciate this! I think we are definitely going to need some words of encouragement over this next month! The address is:
Elijah Rouse c/o Our Children's House at Baylor
3301 Swiss Avenue
Room 121
Dallas, Texas 75204
I was comforted some this morning when I realized that Eli's room number, 121, is my Dad's old badge number! Helped me to think that maybe it was a sign from God that He and my Dad are watching over us and things will work out!!
We want to say thank you to everyone who has prayed for us, sent us words of encouragement, etc. We definitely appreciate them!!
Monday, July 30, 2012
Updated Chipin Information
Here is some updated information for Eli's Chipin. This may be a lot of repeated information for some of you, but I just wanted to be sure that all the information was available.
Eli's Chipin
I have been working with a group on Facebook called Uniquely Gifted. They have suggested starting a Chipin page for Eli to do some fundraising. After really thinking it over, I thought I'd go ahead and give it a try!
So here it is!!
Friday, July 27, 2012
Playing catch up....
Hey Everyone! Sorry it has been a while since my last post! I have gotten a new job! I am the new Family Advocate for the Children's Advocacy Center of the South Plains here in Lubbock. I was a therapist for them for the past year and a half. Since I graduated in May, I have not been able to work as a therapist. I still need to take my National Exam, find an approved supervisor and process all of that through the state. So unfortunately, it may be next Spring before I'm able to start working as a therapist. Getting all the red-tape stuff done to begin working has taken a bit of a backseat with everything going on with Eli. But, I was very fortunate to be able to get this job as the Family Advocate. I've been training the past two weeks, so that hasn't left much time for blogging. And they are being really awesome to let me go ahead and train, then wait to actually start my job when we return at the end of August.
We had our conference call with Baylor a few weeks ago. We are definitely set for admit at Our Children's House at noon on Monday, August 6. We will leave for Dallas on Friday, August 3, try to do some fun stuff before the admission, have the admit on Monday, then Adam will fly back to Lubbock Monday evening. We've been packing and organizing over the past few weeks, but I am hoping to really be able to focus on my packing and organizing this next week!
We have also done more allergy testing with Eli. Below is the complete list of allergens and his reaction. The "flare" is the total size of the red reaction; the "wheal" is the size of the bump. So basically, anything other than a "0" in both columns means he is allergic. It's really tough because of his allergies to rice, soybean, nuts and cow's milk. We have had to change Eli to hemp milk and really reduce his go-gurt intake.
Also, Eli is allergic to the Pediasure 1.5 he has been getting through his pump. The solution: change the formula. Easy enough, right? The problem: Eli's GI doctor here in Lubbock said that Eli doesn't really have any allergies and there is no reason to change the formula. And he called me personally to lecture me for about 10 minutes. He also says that there is no reason to repair the hernia Eli has and thinks it's ridiculous for me to seek out a second opinion. Needless to say, we'll be looking for a new GI doctor. Baylor said they will just change the formula once we get to Our Children's House. We will be switching to EO28 Splash, which is hypoallergenic. However, we were hoping to be able to make this formula change before he admit, so this may lengthen his time at Baylor since we were not able to make the change before now.
We do have an appointment at Cook's Children's in Ft. Worth with the GI group on August 14, so we will get to have a little outing that day. We have also started a Facebook event, asking for prayers and good vibes at noon on August 6 as Eli gets admitted to Our Children's House at Baylor. If you're on Facebook, please feel free to click the link below and RSVP to say a prayer at that time. It's an open event, so we'd also appreciate any sharing.... We know this will be a difficult month and we'll gladly take all the prayers we can get! https://www.facebook.com/#!/events/501851159840581/
So that has been our past 2 weeks! A little busy, somewhat chaotic and stressful, but still filled with LOTS of hope and excitement!!!
We had our conference call with Baylor a few weeks ago. We are definitely set for admit at Our Children's House at noon on Monday, August 6. We will leave for Dallas on Friday, August 3, try to do some fun stuff before the admission, have the admit on Monday, then Adam will fly back to Lubbock Monday evening. We've been packing and organizing over the past few weeks, but I am hoping to really be able to focus on my packing and organizing this next week!
We have also done more allergy testing with Eli. Below is the complete list of allergens and his reaction. The "flare" is the total size of the red reaction; the "wheal" is the size of the bump. So basically, anything other than a "0" in both columns means he is allergic. It's really tough because of his allergies to rice, soybean, nuts and cow's milk. We have had to change Eli to hemp milk and really reduce his go-gurt intake.
Also, Eli is allergic to the Pediasure 1.5 he has been getting through his pump. The solution: change the formula. Easy enough, right? The problem: Eli's GI doctor here in Lubbock said that Eli doesn't really have any allergies and there is no reason to change the formula. And he called me personally to lecture me for about 10 minutes. He also says that there is no reason to repair the hernia Eli has and thinks it's ridiculous for me to seek out a second opinion. Needless to say, we'll be looking for a new GI doctor. Baylor said they will just change the formula once we get to Our Children's House. We will be switching to EO28 Splash, which is hypoallergenic. However, we were hoping to be able to make this formula change before he admit, so this may lengthen his time at Baylor since we were not able to make the change before now.
We do have an appointment at Cook's Children's in Ft. Worth with the GI group on August 14, so we will get to have a little outing that day. We have also started a Facebook event, asking for prayers and good vibes at noon on August 6 as Eli gets admitted to Our Children's House at Baylor. If you're on Facebook, please feel free to click the link below and RSVP to say a prayer at that time. It's an open event, so we'd also appreciate any sharing.... We know this will be a difficult month and we'll gladly take all the prayers we can get! https://www.facebook.com/#!/events/501851159840581/
So that has been our past 2 weeks! A little busy, somewhat chaotic and stressful, but still filled with LOTS of hope and excitement!!!
| ALLERGEN | FLARE | WHEAL |
| Histamine - Control | 40 | 10 |
| Apple | 0 | 0 |
| Wheat | 25 | 5 |
| Rice | 10 | 4 |
| Peanut | 24 | 6 |
| Soybean | 26 | 7 |
| Walnut | 21 | 5 |
| Pecan | 0 | 0 |
| Cashew | 24 | 6 |
| Tuna | 0 | 0 |
| Egg White | 750 | 17 |
| Egg Yolk | 36 | 10 |
| Cow's Milk | 16 | 5 |
| Banana | 0 | 0 |
| Orange | 0 | 0 |
| Baker's Yeast | 0 | 0 |
| Corn | 30 | 12 |
| Tomato | 6 | 4 |
| Potato | 20 | 6 |
| Celery | 14 | 4 |
| Carrot | 20 | 4 |
| Pea | 30 | 10 |
| Shrimp | 20 | 7 |
| Chicken | 0 | 0 |
| Beef | 24 | 6 |
| Pork | 0 | 0 |
Wednesday, July 11, 2012
"I'm gonna be a golfer!"
We had Eli's Golf Scramble yesterday and it was a HUGE success!!! We had about 26 or 27 teams of 4, so it was a great turnout! Honestly, it was a little over-whelming, but still amazing!
Eli stood out front as people were arriving to show of his golf skills. He was so excited for the scramble and told people for about a week "I'm gonna be a golfer!"
I think he had a fun time showing off for everyone and they all thought he was a pretty cool kid!! Several of the players got a good laugh when Eli broke his putter after taking a few hard hits.
After lunch started, Eli was pretty tuckered out from showing off his golf skills, he napped all through lunch. Here he is with Jolee, one of Adam's team members and a great friend of ours.
After lunch ended and the scramble started, I took Eli to the babysitter then met up with Adam and his team to ride along. It was so much fun to see Adam, his team and all the other teams playing!
This is Adam's team: Jolee, Kevin, Adam and Lane.
Here are a few more team pics...
I apologize for not having more pictures; I kept getting so caught up in talking with people, etc that I forgot to take pictures!
I have to say this was an amazing experience. We were able to meet so many wonderful people and I feel like it gave us the opportunity to also get Eli's story out there. The generosity of everyone involved was simply overwhelming and wonderful. Adam and I can't even begin to say how thankful we are to everyone.
There are several people and business that we want to recognize.
First and foremost, Brent, Dustin and Megan from Melt. Y'all are amazing! Choosing Eli as your charity blew us away; then putting together such an awesome fundraiser.... We are forever grateful!
Secondly, to Mayor Robertson, Erin and ALL the staff at Hillcrest Country Club for hosting the Golf Scramble... Everyone was so nice and helpful; and truly a pleasure to be around! The facilities and the course were beautiful and I'm so thankful to each of you!
So many people and business donated things; beer, liquor, raffle items... I don't know how to thank all of you! You were a HUGE part of making this a success!
Also, everyone who donated items for the goody bags: Planet Beach, Intimate Expressions, Radio Lab, Golf Headquarters, Complete Nutrition, Angelina Bodie... And I apologize if I am leaving anyone out. There were just so many amazing donors, all the names were hard to keep up with.
And last, but definitely NOT least, ALL the amazing people who signed up to play or were Tee box sponsors. This most certainly could not have been done without all of you! We had many great friends who played, even some driving in from Dallas and Midland. Then there were the many other people who just played out of the goodness of their hearts... people that we had never met before, but saw the flyers and heard Eli's story and came out to show support. Our thanks go out to each of you.
God bless each and every one of you. You will all have a special place in our hearts. Your support is getting Eli so much closer to the treatment he needs and we are forever grateful!!!
Eli stood out front as people were arriving to show of his golf skills. He was so excited for the scramble and told people for about a week "I'm gonna be a golfer!"
After lunch started, Eli was pretty tuckered out from showing off his golf skills, he napped all through lunch. Here he is with Jolee, one of Adam's team members and a great friend of ours.
After lunch ended and the scramble started, I took Eli to the babysitter then met up with Adam and his team to ride along. It was so much fun to see Adam, his team and all the other teams playing!
Here are a few more team pics...
I apologize for not having more pictures; I kept getting so caught up in talking with people, etc that I forgot to take pictures!
I have to say this was an amazing experience. We were able to meet so many wonderful people and I feel like it gave us the opportunity to also get Eli's story out there. The generosity of everyone involved was simply overwhelming and wonderful. Adam and I can't even begin to say how thankful we are to everyone.
There are several people and business that we want to recognize.
First and foremost, Brent, Dustin and Megan from Melt. Y'all are amazing! Choosing Eli as your charity blew us away; then putting together such an awesome fundraiser.... We are forever grateful!
Secondly, to Mayor Robertson, Erin and ALL the staff at Hillcrest Country Club for hosting the Golf Scramble... Everyone was so nice and helpful; and truly a pleasure to be around! The facilities and the course were beautiful and I'm so thankful to each of you!
So many people and business donated things; beer, liquor, raffle items... I don't know how to thank all of you! You were a HUGE part of making this a success!
Also, everyone who donated items for the goody bags: Planet Beach, Intimate Expressions, Radio Lab, Golf Headquarters, Complete Nutrition, Angelina Bodie... And I apologize if I am leaving anyone out. There were just so many amazing donors, all the names were hard to keep up with.
And last, but definitely NOT least, ALL the amazing people who signed up to play or were Tee box sponsors. This most certainly could not have been done without all of you! We had many great friends who played, even some driving in from Dallas and Midland. Then there were the many other people who just played out of the goodness of their hearts... people that we had never met before, but saw the flyers and heard Eli's story and came out to show support. Our thanks go out to each of you.
God bless each and every one of you. You will all have a special place in our hearts. Your support is getting Eli so much closer to the treatment he needs and we are forever grateful!!!
Monday, June 25, 2012
"Oh... WOW!"
Well, we met with the allergist and immunologist this morning. We have been seeing him for about a year now, but this morning's appointment was to start testing for Eli's food allergies. I continue to be impressed by this doctor. He has always been very knowledgeable and I was very please to hear that he actually knew what Eosinophilic Esophagitis was!!!
So the nurse came in to get the test started, drawing a grid down Eli's back. Then he started the test.... Thank goodness Adam was there. I don't think I could have held Eli by myself... Poor guy was not happy being pricked down his back. After the nurse finished applying the allergens to Eli's back, he left the room to give the allergens a chance to react. After about 15 minutes, he came back to the room. His eyes got really big and he said, "Oh.... Wow! We've had some reactions! I was NOT expecting that!" He seemed to be pretty amazed at the reaction that Eli had to some of the allergens.
We only tested for 13 allergens today. We will plan on testing for other fruits, vegetables, proteins, etc. later on. Below is a table of the results of today's test. The Allergens tested for are listed first, followed by the Flare measurement (the size of the redness or rash), then the Wheal measurement (the size of the bump).
So basically, Eli had NO REACTION to:
After this testing, we also went to have lab work done. The doctor ordered a "Pedi Food Panel" so they drew 4 vials of blood and will be testing it for allergies; they will repeat everything that the scratch test tested for, as well as a few other allergens. We should have those results in a few days!
So basically, we have a good starting point. This will give us a good place to start at Baylor once they are able to get Eli to start eating. A Gluten-free diet is probably going to be best for Eli. We are also planning to work very closely with a nutritionist to monitor Eli's diet and calorie intake.
The doctor also asked if we were doing an Elemental or Elimination diet with Eli. Unfortunately, we haven't been given much guidance in that area.... We're really hoping to get more information from Our Children's House; we're also planning to get a second opinion from a GI doctor at Cook's Children's Hospital as far as the hernia and other GI issues are involved.
But, this is definitely a step in the right direction. Now that we are beginning to find out exactly what Eli is allergic to and is causing or will cause EE reactions, we can begin to build a healthy, non-reactive diet for him once he begins to have oral intake!!!!
We're very excited to finally be getting somewhere with his health issues and have big hopes for his future!!!
So the nurse came in to get the test started, drawing a grid down Eli's back. Then he started the test.... Thank goodness Adam was there. I don't think I could have held Eli by myself... Poor guy was not happy being pricked down his back. After the nurse finished applying the allergens to Eli's back, he left the room to give the allergens a chance to react. After about 15 minutes, he came back to the room. His eyes got really big and he said, "Oh.... Wow! We've had some reactions! I was NOT expecting that!" He seemed to be pretty amazed at the reaction that Eli had to some of the allergens.
We only tested for 13 allergens today. We will plan on testing for other fruits, vegetables, proteins, etc. later on. Below is a table of the results of today's test. The Allergens tested for are listed first, followed by the Flare measurement (the size of the redness or rash), then the Wheal measurement (the size of the bump).
So basically, Eli had NO REACTION to:
- Apple
- Pecan
- Tuna
- Banana
- Wheat
- Rice
- Peanut
- Soybean
- Walnut
- Cashew
- Cow's Milk
- Egg White
- Egg Yolk
After this testing, we also went to have lab work done. The doctor ordered a "Pedi Food Panel" so they drew 4 vials of blood and will be testing it for allergies; they will repeat everything that the scratch test tested for, as well as a few other allergens. We should have those results in a few days!
So basically, we have a good starting point. This will give us a good place to start at Baylor once they are able to get Eli to start eating. A Gluten-free diet is probably going to be best for Eli. We are also planning to work very closely with a nutritionist to monitor Eli's diet and calorie intake.
The doctor also asked if we were doing an Elemental or Elimination diet with Eli. Unfortunately, we haven't been given much guidance in that area.... We're really hoping to get more information from Our Children's House; we're also planning to get a second opinion from a GI doctor at Cook's Children's Hospital as far as the hernia and other GI issues are involved.
But, this is definitely a step in the right direction. Now that we are beginning to find out exactly what Eli is allergic to and is causing or will cause EE reactions, we can begin to build a healthy, non-reactive diet for him once he begins to have oral intake!!!!
We're very excited to finally be getting somewhere with his health issues and have big hopes for his future!!!
Saturday, June 23, 2012
And the winners are.....
Well, the raffle is over and we have drawn the names of the winners!
First off, we want to say a HUGE thank you to everyone who donated prizes for the raffle! We could not have done it without you! Donors are:
~Deborah Baremore - Scensty gift basket
~Mike at Elite Mill Works - Twin-on-Twin bunk bed
~Morrison's Supply - Milwaukee Cordless Tool Set
~Jan Belli - 2 Massage gift cards
~Brent Murray - 2 Melt gift cards
~Kevin DeVore - Spoonful gift card
Your generosity in donating these prizes just amazes us! Thank you for caring so much about Eli and helpuing us get him the treatment he needs! This would not have been possible without you!!
Second, we want to thank EVERYONE who purchased chances! Every dollar raised will help with expenses while Eli is at Our Children's House at Baylor Medical Center. We are so grateful for everyone who bought tickets and supported this effort to help offset expenses for the trip!
Lastly, we want to say CONGRATULATIONS to everyone who won!!!! We had people purchase anywhere from 1 ticket per package..... to 40 or 50 tickets per package!!! We know we had some awesome packages and prizes to choose from, but we also know that the money spent on those tickets was given from your hearts in order to help with the financial burden of this journey to Baylor! So we want to thank you, as well, for giving from your hearts!!!
AND THE WINNERS ARE......
~Missy Thomson - Twin-on-Twin bunk beds
~Brent Murray - Milwaukee tool set
~Billy Mebane - Complete Nutrition, Ulta and Massage gift cards
~Kendall Owen - Scensty gift basket, Melt and Massage gift cards
~Jolee and Lane Luce - Chili's, Spoonful, Melt and Cinemark gift cards
Congratulations again to all the winners and thank you to everyone who donated prizes and purchased tickets!! We love you all and appreciate you and your generosity!!!
First off, we want to say a HUGE thank you to everyone who donated prizes for the raffle! We could not have done it without you! Donors are:
~Deborah Baremore - Scensty gift basket
~Mike at Elite Mill Works - Twin-on-Twin bunk bed
~Morrison's Supply - Milwaukee Cordless Tool Set
~Jan Belli - 2 Massage gift cards
~Brent Murray - 2 Melt gift cards
~Kevin DeVore - Spoonful gift card
Your generosity in donating these prizes just amazes us! Thank you for caring so much about Eli and helpuing us get him the treatment he needs! This would not have been possible without you!!
Second, we want to thank EVERYONE who purchased chances! Every dollar raised will help with expenses while Eli is at Our Children's House at Baylor Medical Center. We are so grateful for everyone who bought tickets and supported this effort to help offset expenses for the trip!
Lastly, we want to say CONGRATULATIONS to everyone who won!!!! We had people purchase anywhere from 1 ticket per package..... to 40 or 50 tickets per package!!! We know we had some awesome packages and prizes to choose from, but we also know that the money spent on those tickets was given from your hearts in order to help with the financial burden of this journey to Baylor! So we want to thank you, as well, for giving from your hearts!!!
AND THE WINNERS ARE......
~Missy Thomson - Twin-on-Twin bunk beds
~Brent Murray - Milwaukee tool set
~Billy Mebane - Complete Nutrition, Ulta and Massage gift cards
~Kendall Owen - Scensty gift basket, Melt and Massage gift cards
~Jolee and Lane Luce - Chili's, Spoonful, Melt and Cinemark gift cards
Congratulations again to all the winners and thank you to everyone who donated prizes and purchased tickets!! We love you all and appreciate you and your generosity!!!
Monday, June 18, 2012
A Note to Doctors
Another mother on one of the Facebook pages I'm a part of recently posted this. If we could somehow give this to all of Eli's doctors.... As a parent of a child with multiple health issues, you get accustomed to going from one doctor to another. And, unfortunately, you also become accustomed to being told, "Well, we need to refer you to....", "I don't know....", or a long drawn-out explanation full of medical terms we don't understand. We've also become accustomed to the sighs, the eye rolls, the irritation in the nurses voice when you call to ask another question about a rash, a leaky tube, a medication...... I understand these doctors see multiple kids a day. I understand this is routine for them. But this is not routine for me; this is my child who is sick and literally CAN'T eat. A fever to him could result in late-night ER visit or a lengthy hospital stay, more lab work and tests, more medications..... If doctors could, just for a minute, see it from the perspective of a parent. Lauren Sellers, out of her own personal frustrations with her child's doctor, composed this letter with the help of other parents of medically fragile children.
Parents of Tube-Fed Children Ask This of You…
By Lauren Sellers, with the help of over twenty moms of tube-fed children
1. Consider what our daily life as the parent of a tube-fed child looks like.
Many of us arise at a ridiculously early hour in the morning to the incessant beeping of a pump, a child crying because a tube detached and they are covered in stomach contents or a wet bed after diaper leaks. Buttons pop out, or are sometimes ripped out. After a rough morning, our days do not get any easier. Michelle Wilson describes it well by saying, “Almost all day long, all we think about is how to feed our child, how much time will it take, how much to give, how fast or slow to give it, can they handle this volume, are they growing, can I feed them this...oh how I wish they would just eat.”. We cannot simply throw some diapers and some snacks in a bag and walk out the door. Preparation for everything is an exhausting process. And if we are desperate for just a little time to ourselves, we have to then rely on family and friends, who often have no idea how, or are too frightened to watch our medically fragile children. The stress from never getting away from all things medical puts a huge strain on relationships with our spouses especially. We do not have any time together, without the discussion of medical supplies, hospital visits, bowel movements, fights over feedings, vomiting, and other less-than romantic topics. Financial struggle is also a big issue with most families. Formula and/or special foods are not always covered by insurance, along with extra supplies like protective belts, spare buttons for emergencies, and back packs that make our life and theirs easier. We spend money on gas for every trip to the doctor’s office or hospital, parents miss work, and other family members do without as well. Having a tube-fed child is taxing in many ways.
2. Inform us in a compassionate manner.
We know you are the experts, which is why we come to you. Please do not speak to us as if we were a nuisance. We know that you see a lot of kids. It’s not as if we take joy in calling your office and listening to all of the extension choices, just to be sent to your voicemail. We only call when we have a valid concern about our child’s health, so please take the time to address our concerns in a timely manner. As Lisa Cavitt points out, “This is a living breathing human being I am pumping fluids into, and if he/she is getting sick every feed, or has a rash or discoloration, or a leak, to me, it is serious because it is not normal, and the minute I assume I know what I'm doing and I hurt her, it is ME that has to explain to [her] why I did what I did.”
We would love to have a happy, symptom-free, tube-free child that no longer needs your services, but until that day comes, it would be great if we could work together as a TEAM. Katrena Lee wants you to know that, “This is TOUGH for us…be kind, compassionate and understanding. Help us work through the issues with you.” Our children are not milliliters or ounces, so talk to us about the overall health, and goals that we need to achieve, not just about numbers. Every child is different. And sometimes, even when we follow your orders meticulously, our child will still refuse to eat anything, and while that may be upsetting to you, it is devastating to us! Please do not assume that if a child is not gaining weight, it is not because we are not trying every last thing we can possibly think of to coax them into taking one bite. All any of us want is for our child to grow and be healthy.
3. Trust us.
We know our child better than anyone. We make the choice to come to you because we trust you will do your best for our child, so trust that we also have our child’s best interests in mind. Trust us to make good decisions for our child, and help us if we are having trouble. Please have respect for parents dealing with feeding issues 24/7. We do know what we are talking about. Our life revolves around each calorie consumed. We know what food our child can, and cannot tolerate, or will even try. When the time comes that you do not know what’s best, listen to us. In many cases, we have to figure out many of our child’s issues on our own. Don’t judge us simply by our reactions. None of us dreamed motherhood would mean sticking objects into a hole in our child’s stomach, treating wounds, draining stomachs, venting, or flushing. Our laughter may come from our uneasiness in the situation, or our apparent lack of emotion might come from chronic fatigue. We go through a lot more than most parents ever will, and we are tougher for it. Just because we act one way in your office, doesn’t mean that we do not scream in our car after an appointment, or cry once our child is asleep at night. Our child is always our top priority.
4. Remember that tube feeding is not all bad.
As I have explained at length above, there are definite negatives to having a tube-fed child. But when we do see our child finally have the energy to run around our yard, not cringe over the thought of food that hurts to eat, finally start to catch up developmentally, return to their “old self” (as I have seen with my son), and in other children’s cases, stay alive, we are so incredibly thankful for those tubes. We all hope to get rid of the tube one day, and we work hard with doctors and therapists to do so, but we ask that you still remember how much tubes improve the lives of those that need them.
Parents of Tube-Fed Children Ask This of You…
By Lauren Sellers, with the help of over twenty moms of tube-fed children
1. Consider what our daily life as the parent of a tube-fed child looks like.
Many of us arise at a ridiculously early hour in the morning to the incessant beeping of a pump, a child crying because a tube detached and they are covered in stomach contents or a wet bed after diaper leaks. Buttons pop out, or are sometimes ripped out. After a rough morning, our days do not get any easier. Michelle Wilson describes it well by saying, “Almost all day long, all we think about is how to feed our child, how much time will it take, how much to give, how fast or slow to give it, can they handle this volume, are they growing, can I feed them this...oh how I wish they would just eat.”. We cannot simply throw some diapers and some snacks in a bag and walk out the door. Preparation for everything is an exhausting process. And if we are desperate for just a little time to ourselves, we have to then rely on family and friends, who often have no idea how, or are too frightened to watch our medically fragile children. The stress from never getting away from all things medical puts a huge strain on relationships with our spouses especially. We do not have any time together, without the discussion of medical supplies, hospital visits, bowel movements, fights over feedings, vomiting, and other less-than romantic topics. Financial struggle is also a big issue with most families. Formula and/or special foods are not always covered by insurance, along with extra supplies like protective belts, spare buttons for emergencies, and back packs that make our life and theirs easier. We spend money on gas for every trip to the doctor’s office or hospital, parents miss work, and other family members do without as well. Having a tube-fed child is taxing in many ways.
2. Inform us in a compassionate manner.
We know you are the experts, which is why we come to you. Please do not speak to us as if we were a nuisance. We know that you see a lot of kids. It’s not as if we take joy in calling your office and listening to all of the extension choices, just to be sent to your voicemail. We only call when we have a valid concern about our child’s health, so please take the time to address our concerns in a timely manner. As Lisa Cavitt points out, “This is a living breathing human being I am pumping fluids into, and if he/she is getting sick every feed, or has a rash or discoloration, or a leak, to me, it is serious because it is not normal, and the minute I assume I know what I'm doing and I hurt her, it is ME that has to explain to [her] why I did what I did.”
We would love to have a happy, symptom-free, tube-free child that no longer needs your services, but until that day comes, it would be great if we could work together as a TEAM. Katrena Lee wants you to know that, “This is TOUGH for us…be kind, compassionate and understanding. Help us work through the issues with you.” Our children are not milliliters or ounces, so talk to us about the overall health, and goals that we need to achieve, not just about numbers. Every child is different. And sometimes, even when we follow your orders meticulously, our child will still refuse to eat anything, and while that may be upsetting to you, it is devastating to us! Please do not assume that if a child is not gaining weight, it is not because we are not trying every last thing we can possibly think of to coax them into taking one bite. All any of us want is for our child to grow and be healthy.
3. Trust us.
We know our child better than anyone. We make the choice to come to you because we trust you will do your best for our child, so trust that we also have our child’s best interests in mind. Trust us to make good decisions for our child, and help us if we are having trouble. Please have respect for parents dealing with feeding issues 24/7. We do know what we are talking about. Our life revolves around each calorie consumed. We know what food our child can, and cannot tolerate, or will even try. When the time comes that you do not know what’s best, listen to us. In many cases, we have to figure out many of our child’s issues on our own. Don’t judge us simply by our reactions. None of us dreamed motherhood would mean sticking objects into a hole in our child’s stomach, treating wounds, draining stomachs, venting, or flushing. Our laughter may come from our uneasiness in the situation, or our apparent lack of emotion might come from chronic fatigue. We go through a lot more than most parents ever will, and we are tougher for it. Just because we act one way in your office, doesn’t mean that we do not scream in our car after an appointment, or cry once our child is asleep at night. Our child is always our top priority.
4. Remember that tube feeding is not all bad.
As I have explained at length above, there are definite negatives to having a tube-fed child. But when we do see our child finally have the energy to run around our yard, not cringe over the thought of food that hurts to eat, finally start to catch up developmentally, return to their “old self” (as I have seen with my son), and in other children’s cases, stay alive, we are so incredibly thankful for those tubes. We all hope to get rid of the tube one day, and we work hard with doctors and therapists to do so, but we ask that you still remember how much tubes improve the lives of those that need them.
Friday, June 8, 2012
What now?
We were at Eli's feeding therapy when I received the call from the doctor's office concerning the biopsy results.
Back in June 2011, we were referred to the Texas Tech University Health Sciences Center for genetic testing. We did the lab work in June, but it took until August to get the results. Needless to say, we're becoming accustomed to waiting for answers and results. When those results finally came back that Eli had Klinefelter's syndrome, I got the phone call from the doctor's office and my stomach immediately dropped when I answered the phone, fully expecting a nurse to be on the other end, but surprised to hear the doctor's voice.... That's never a really good sign.
Well, I got that surprise again today. The phone rings, I immediately know that it is the GI doctor's office calling, and I answer... only to hear, "Hi Rachel. This is Dr. Higgins. Guess who has Eosinophilic Esophagitis." So, it's official.... Add one more diagnosis to the list. Eli has Eosinophilic Esophagitis. I'm still getting used to saying that; not because it's so difficult to pronounce, but because it's just one more battle; one more thing to medicate; one more thing to deal with. Talk about scary.
So, Dr. Higgins has called in an inhaled steroid, only he doesn't want Eli to inhale it; he wants it dropped down his throat and swallowed. We'll start that today.
Then we go back to Dr. Higgins in a month for a follow up, both with the EE, as well as with the hernia.
We also have another appointment scheduled with the Allergist and Immunologist to do a consultation to begin testing for food allergies.
Just when we think things are calming down, we're thrown for a loop.
So, now we'll start this treatment and just keep going. I have to keep telling myself, "Don't give up. This can be dealt with."
We just ask for continued prayers. Things are going to be tough for a while. We're going to continue with therapy to work on sensory issues, but have to put other things on hold until Eli has been doing the treatment for EE for a bit. He can't exactly try to eat when he's allergic to food.... At least things are starting to make sense now. He doesn't eat because it DOES hurt. And because of that pain, he's terrified of food. He gags, partially because of fear, but also because of the reaction in his esophagus.
It's a lot to take in. But we'll deal with this, too. Like Adam (my husband) said, "At least it's an answer." This is the answer we've been waiting for since August 2010; almost 2 years. But now we have an answer and now we can begin to formulate a plan.
For more info about Eosinophilic Esophagitis, visit http://www.eosinophilicesophagitishome.org
Thursday, May 31, 2012
One Step Closer....
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!
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 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.
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