We got on the boat!

It seems like it has been forever since I've sat down to blog. The kids are getting older and have more going on in their lives, as do Adam and I. I keep thinking, "I need to blog today", then time gets away from me and the day is gone before I know it. Finally, the kids are napping and I'm excited to finally be sitting down at the computer to update all of you on what has been going on the past few months. 

There's an old parable about a drowning man that goes a little something like this:

While out to sea, a large boat became shipwrecked and there was only a single survivor. This man prayed and asked God to save his life. Soon thereafter, another boat came by and offered the man some help.

"No thanks," he said. "I'm waiting for God to save me."

The men on the boat shrugged their shoulders and continued. As the man became more deeply concerned, another boat came by. Again, the people aboard offered this man some help, and again he politely decline. "I'm waiting for God to save me," he said again.

After some time, the man began to lose his faith, and soon after that he died. Upon reaching Heaven, he had a chance to speak with God briefly.

The man asked God, "Why did you let me die? Why didn't you answer my prayers?"

God replied, "I sent you two boats!" 

While living in Lubbock, Adam and I felt a bit trapped, almost like we were drowning. When I was pregnant with Ella and the doctor said that she would most likely be diagnosed with Eosinophilic Esophagitis, Adam and I discussed the possibility of moving closer to Fort Worth and the doctors at Cook Children's Hospital. After Ella was born, our trips to Fort Worth became much more frequent. We were driving to Cook's about every 4 - 6 weeks. It was breaking us. While living in Lubbock, Adam and I felt a bit trapped, almost like we were drowning. The discussion of moving came up more frequently, but we just didn't know how to make it all work. I wasn't working at the time, but had been looking for jobs in Lubbock with no avail. I loved the time that I worked at the Children's Advocacy Center (CAC) and I knew that was what I wanted to do. So, I began emailing the CACs around Fort Worth asking if they had any therapist positions available. (For those of you who don't know, I have my Masters degree in Counseling Psychology and am working toward being a Licensed Professional Counselor.) I was surprised and excited when I got an email back from the Paluxy River Children's Advocacy Center in Granbury, Texas that they had received a new grant for a part-time therapist! I had never been to Granbury, but I was excited to visit. So, Adam and I came to visit and I fell in love. I interviewed for the position and got it!

The next step was finding a job for Adam. He did find a job working for a plumbing company outside of Granbury and was offered the position on the spot. We immediately went house-hunting and found a great rental property and put down our deposit. So, the decision was made and pretty well set in stone... we were moving! We got on the boat! Adam and I felt like this was God sending our rescue boat and we did not want to pass it up. 

We moved to Granbury the end of March 2014, got settled and have started building our new life here. It has not been easy. There are those times that we think, "Okay... did we make the right decision?" Then we think about the fact that our kids are 30 minutes away from their specialists instead of 6 hours. That was our main goal in moving here. Then we think about the fact that I was hired at an agency that I love doing what I feel is my calling and that just affirms that we made the right decision for our family. 

We still have a lot of work to do. We're getting the kids settled with all their new doctors; specialists that they saw in Lubbock and now have to find in Fort Worth. But so far, we've been very pleased and have been able to get into doctors all affiliated with Cook Children's Hospital, which is such a blessing. We have our house in Lubbock on the market and are hoping it sells soon so we can begin to look at getting "officially settled" in the next year or so and buy a home in Granbury. Eli is signed up for flag football this fall which is very exciting! We always wanted him to play sports, but did not feel comfortable with it in Lubbock. And maybe in a few years, Ella will be doing gymnastics or cheer! The opportunities and experiences we've had so far in the past 3 months have been amazing. We love our new town and what it offers. We're just thankful that God sent that boat and we had the awareness to trust God and climb on board!

While out to sea, a large boat became shipwrecked and there was only a single survivor. This man prayed and asked God to save his life. Soon thereafter, another boat came by and offered the man some help.

"No thanks," he said. "I'm waiting for God to save me."

The men on the boat shrugged their shoulders and continued. As the man became more deeply concerned, another boat came by. Again, the people aboard offered this man some help, and again he politely decline. "I'm waiting for God to save me," he said again.

After some time, the man began to lose his faith, and soon after that he died. Upon reaching Heaven, he had a chance to speak with God briefly.

"Why did you let me die? Why didn't you answer my prayers?"

"Dummy, I sent you two boats!" - See more at: http://www.spiritual-short-stories.com/spiritual-short-story-101-Drowning+Man.html#sthash.4MiyPYeh.dpuf

While out to sea, a large boat became shipwrecked and there was only a single survivor. This man prayed and asked God to save his life. Soon thereafter, another boat came by and offered the man some help.

"No thanks," he said. "I'm waiting for God to save me."

The men on the boat shrugged their shoulders and continued. As the man became more deeply concerned, another boat came by. Again, the people aboard offered this man some help, and again he politely decline. "I'm waiting for God to save me," he said again.

After some time, the man began to lose his faith, and soon after that he died. Upon reaching Heaven, he had a chance to speak with God briefly.

"Why did you let me die? Why didn't you answer my prayers?"

"Dummy, I sent you two boats!" - See more at: http://www.spiritual-short-stories.com/spiritual-short-story-101-Drowning+Man.html#sthash.4MiyPYeh.dpuf

We're Ba-ack!

Driving in to Fort Worth a few weeks ago for the kids' procedures was like deja vu. Two trips in two weeks.... Our days, our appointments... they all seemed to just run together. Even though we were exhausted, it was also a relief to be there, having tests run again on both kids and having procedures done, all with hopes of getting answers.

This was eighth set of scope and biopsies. They've become fairly routine. Every few months, we introduce new foods, and then follow up with scopes and biopsies to see if there are any eosinophils (evidence of a reaction to what he has been eating). This go-round, we did not introduce any new foods. In the past, Eli had been find with eating blue berries. Then, one day, he came to us and said that he did not want to eat them anymore. This was probably around October 2013. And this was a first. I don't remember him ever coming to us like this before. He told us that blue berries hurt and he did not want to eat them anymore. Eli was almost 5 at the time and, in our opinions, old enough to tell us when something was going on. So, we removed blue berries from his diet. (We do occasionally offer them to him, but he still refuses them.) Even though we removed the blue berries, we continued to see signs that Eli was having a flare. He had a horrible cough. He had dark "allergy shiners" that teachers, therapists, etc. were noticing and commenting on. His eczema was horrible on his legs and hands. We just weren't comfortable with introducing a new food to his diet while he was having all these symptoms.

So, on Wednesday, March 5, Eli went in for Scope and Biopsy #8. The results: no eosinophils, but esophagitis. This basically means that he has inflammation and irritation in his esophagus. He also had yet another yeast infection in his esophagus. So he was prescribed a 21-day round of steroids for that. Also, while talking to all the nurses, doctors and anesthesiologists before the procedure, we discovered that Eli had actually had an anaphylactic reaction to a medication when he had his procedure in August 2012. After that particular procedure, Eli's face and neck/throat were very swollen and he had coughed so hard, he popped the blood vessels in his face. At this procedure in march, the anesthesiologist discovered that they had accidentally used a medication with egg, causing the anaphylactic reaction. We're just grateful we were at this particular hospital, where they were able to handle the reaction appropriately.

(This photo is from the procedure in August 2013, that shows the visible effects of the anaphylactic reaction Eli had.)

The yeast infections seem to be caused by Eli being on too many antibiotics. With Eli's compromised immune system, Eli gets sick very often and very easily. I should probably go back to the week between the appointments and procedures....


After returning to Lubbock after the kid's appointments and preparing to return to Fort Worth for procedures, both kids seemed to have colds. I HAD to have them well for their procedures the following week. So, I took them to their pediatrician, fully expecting it to be allergies or a mild cold. They tested both kids.... and Eli came back with Flu - Type A..... FOR THE THIRD TIME SINCE DECEMBER!!! Eli and Ella both are unable to get the flu shot because of the egg in it. The pediatrician actually took the test around to other doctors in the office to have them confirm it because they simply couldn't believe it was positive for the same strand for the third time! All he had was the sniffles! The pediatrician believed he was on the tail end of it, so she did not prescribe Tamiflu, but sent Eli home, to stay out of school the remainder of the week. That was on Tuesday.


Wednesday morning, Eli woke up vomiting. He wouldn't eat. He wouldn't drink. He would go into the restroom, but was unable to urinate. At one point, he came out of the bathroom, buck naked. I asked him if he was okay and what he needed. Eli looked at me, with a blank stare on his face, then looked around, shrugged his shoulders and walked off. This was, obviously, not normal. We tried running Gatorade through his g-tube, but did not see any results. So... it was off to the emergency room. They ended up admitting him Wednesday night and discharged him Friday evening. They believe that the flu just hit him too hard and caused him to become too dehydrated for his little body to handle it. Thankfully, he was still able to have his procedure the following week.


Fast forward to today, March 28 (Ella's First Birthday)... we have just finished the steroid for the yeast infection in his esophagus... and started a 10-day round of antibiotics for an ear infection. He's such a trooper!


Now, on to Ella!


This was her first procedure. It never gets easier; even with it being Eli's eighth. Then combine that with Ella's first.... talk about a nervous wreck!! But, as always, Cook Children's Hospital in Fort Worth was AMAZING!!! Ella was first on the list and Eli was third. So, once Eli arrived for pre-op, the put both of them in the same room, with made them (and us) very happy.

On top of having the upper GI scope and biopsies, Ella was also having a pH probe done. Since she was very young, Ella has always had horrible reflux and has sounded like she was aspirating. Medication has yet to help. The pH probe has a sensor on the end of it; it goes up the nose and down, into the esophagus and is supposed to record data for 24 hours.Note, I said SUPPOSED..... Ella, who we've since nicknamed "Hurricane Ella" managed to reach her little hand passed the tape and RIP the probe out of her nose after about 6-7 hours. This is a before pic. You can obviously see how displeased she is!

The probe was an outpatient procedure, so we were at the hotel when she ripped it out. I can honestly say, Fort Worth drivers were INCREDIBLY nice. I flipped my emergency flashers on and made my way to the Cook Children's Emergency Room. Other drivers were so courteous to let me go through traffic. Unfortunately, nothing could be done about the probe. It has to be placed under sedation and it was too risky to try sedating Ella again, twice in one day, and after eating and drinking some. So, we are still hopeful that some results can be found; Otherwise, we will have to complete the probe again in a few weeks. The doctor also ordered a stool sample. He wanted to see how (and if) her body was absorbing fats and sugars. We are still awaiting those results.

As for the biopsy results, they were the same as Eli's: no presence of eosinophils, but esophagitis. So, we are still very careful with what we introduce into Ella's diet, while also trying to introduce a variety of textures, consistencies and flavors (not an easy thing to do!).

So, now we wait. We wait for the other test results. We wait for the next appointment. We wait to see how both kids react to the foods we introduce to their diets. We've become quite accustomed to this waiting game.

We continue to thank everyone for their prayers and concerns. Adam and I have been blessed with some pretty amazing kids and we cherish the adventures we have with them as we enjoy the good and learn from the not-so-good!

Information Overload

Even though, when I started out with this blog, it was all about Eli and his journey, it has definitely developed into a shared blog about Eli AND Ella. So, from here on out, my updates will be concerning both of them, their medical updates and our journey as a family through all of this medical "stuff" (for lack of better word).

We just returned home last night from another trip to Fort Worth for appointments for the kids. We've gone from a 30 minute doctors visit with occasional procedures with Eli, to an all day or two-day trip with appointments and procedures and lab work, etc..... Eli had his second appointment Wednesday morning with Dr. Pfaff in the Pulmonology Clinic. We are still working to figure out what the best route of treatment is for Eli. It is difficult because of the overlap with his cough variant asthma and the symptoms of his EoE. The changes in weather (which happen quite often in West Texas) or an allergy flair can set off his asthma symptoms. However, Dr. P said that, all things considered, Eli seems to be doing well. We'll have to wait to see what his next GI scope and biopsies show, but otherwise, Dr. P is okay with us waiting 6 months to return for a follow-up. We have a fairly comprehensive Asthma Management Plan with meds, rescue inhalers and steroids, so that helps so much with managing his symptoms and being prepared for a "worse case scenario".

Wednesday afternoon was dedicated to both kids seeing Dr. Osuntokun in Gastroenterology. We've been so anxious, nervous and excited for this appointment. It was Ella's second appointment; we've been slowly introducing a very limited, carefully selected array of foods. However, she has still been visibly reacting to something. She has had the notorious "allergy shiners" like Eli gets when he is "flairing"/reacting, as well as eczema on her arms and legs. These are signs Eli had as a baby, but we didn't know then that they were related to food allergies. Anyway, Ella has also been having horrible reflux. Even though she is on meds, they don't seem to be controlling it. She has had several times that you can hear her spitting up or "refluxing", but nothing comes out; Then she starts to gasp for air and her eyes fill with tears. We're fairly sure that she is aspirating. It's pretty impossible to NOT compare our experiences with Ella to our experiences with Eli. When Eli was a baby, it seemed like we were doing lab work every time we turned around. With Ella, she hasn't had lab work since she was a newborn! So, Dr. O ordered a full panel of lab work; CBC, check for Celiacs, anemia, etc. We are hoping to get those results in about a week.

Dr. O also said that we need to go ahead and scope Ella to check for EoE and any damage to her esophagus. At the time of her scope, they will also be placing an Impedence PH Probe. This is similar to an NG tube, in that it will go up her nose and down into her esophagus. It has a little sensor on the end of it that will monitor any reflux and aspiration and record the results. It will have to stay in for 24-hours, so they will discharge us to the hotel after the scope, then Adam and I will be responsible for removing it the next day and taking it back to the hospital to get the results. While we're somewhat excited to do these procedures, simply for the fact of getting the results, we're also very nervous to have Ella sedated for procedures before she is a year old. It's also going to be very difficult to have the PH probe in for 24 hours and keeping her from pulling it out. But, getting these answers will definitely help us with planning and preparing for a course of action for Ella!

Since Ella will be one in about a month and a half, we will also be transitioning her from Elecare for Infants to Elecare Jr. Vanilla, which is the same formula Eli is on. It will be kind of nice to have them on the same formula instead of constantly worrying about giving them the wrong one! =)

Eli will also be having an upper GI scope and biopsies at the same time as Ella. It has been August of 2013 since Eli's last scope. Although we have not added anything new to his diet, he also seems to be reacting to something; allergy shiners, cough, eczema... the whole 9 yards. So, the scope will help us to know if it is something in his diet or just environmental allergies. If it is something in his diet, we will have to work to remove things to see if he improves symptomatically, as well as scoping clean. It kind of feels like we are starting over at square one. While we were at the appointment, Dr. O also changed out Eli's G-button since it hadn't been done in a while. One of these days, Adam and I will have to get comfortable enough to do it.

So.... In two weeks, right after Eli's 5th Birthday, we will be heading back to Fort Worth for these procedures for the kids. Our anxiety level is already through the roof. I don't think it ever gets easier, even though this will be Eli's eighth scope. Then, add Ella's first scope AND the PH Probe on top of that.... we're pretty nervous. However, we are still so excited to be moving in a good direction, getting answers and getting to a point of knowing where to go from here!

As always, prayers are greatly appreciated and we will post updates as we get them!!!