The Baylor Family Blog

1. Physical Therapy–Eli had his first visit with the physical therapist related to his torticollus on Thursday. It appears he has a mild case, so only a few visits will be necessary. Eli could only tolerate the physical therapist for about 20 minutes. Eli is now sleeping on his left side to relieve pressure from the right side of his head. I have some exercises to work with him on, and we are supposed to encourage lots of tummy time. The PT was very impressed with Eli’s head control and tolerance of tummy time. We’ll return to physical therapy on Thursday.

2. GI Specialist–Friday brought us a visit to a pediatric GI specialist related to the strong possibility that Eli has a cow’s milk protein allergy. Dr. Yazdi was excellent. He put Eli on a prescription formula called Elecare that apparently is impossible to be allergic to. Within 7-10 days, we should see a change in Eli in regards to him tolerating his feedings. If he is still having difficulties with feeding, there may be another issue involved. If he is doing great in 10 days, it pretty much means he’s allergic to cow’s milk protein. The ironic thing we learned is that Enfamil’s Nutramagen formula (which the pediatrician started him on earlier in the week) that is supposed to be for infants who are allergic to cow’s milk protein is actually dairy based. Therefore lots of babies with the allergy cannot tolerate it. Eli’s feedings never really improved on the Nutramagen. The new formula mixes well and smells better than many of the others we’ve tried out (yeah!). Apparently it also causes constipation, so Eli is now taking a laxative daily. Our insurance, unfortunately, does not cover this formula. Our doctor did tell us we can find it reasonably priced on Ebay…so if he stays on it, it looks like that will be our source. The pharmacies in town charge $54/can…and we’ll be going through probably 2 cans/week. We are tentative to go out and buy anything as Eli has changed formulas soo many times…it seems like in this case, it may be best to wait and see what happens.

3. Hiking in the Florrisant Fossil Beds–Prior to camping, a group of us headed up the highway for a nice 5 mile hike in the fossil beds. More than anything, it was so nice to be out in nature and have some good conversations! We did walk on a loop and saw some petrified GIANT tree stumps that were pretty cool.

4. Camping–We packed and crammed more things into Daisy (my car) than I ever imagined possible. And then we called our friends Andrew and Kristi to bring a few more things for us in their car! Upon arriving at the campground, we were greeted by lots and lots of may flies and wind. Unfortunately, there wasn’t a tree anywhere that could even help brace us from the breeze. I kept Eli wrapped in a blanket to protect him from the bugs and wind. I think the poor guy was getting a bit over-stimulated as he pretty much refused to eat. And our tent was missing a vital part to the fly that would protect our tent from flooding. So with all these factors, we spent the day with our friends at the campsites before heading back home to spend the rest of the weekend in the luxury of our home! Matt did manage to fit in a game of croquet. And our friends moved the “community dinner” to Saturday night so we could eat with everyone! God sure has blessed us with some wonderful friends!

5. Matt’s birthday–On Sunday, May 27th, my husband turned 30!! We had a suprise (somewhat) Shrek birthday party for him on Saturday on the campsite complete with fudge marble cake with sprinkles! Matt enjoyed his shrek ears and blower and lots of party favors and candies!! Then on Sunday, we loaded our bikes and headed downtown for wonderful ride on the Santa Fe trail through Monument Valley Park with little Eli enjoying his new bike trailer! We ate lunch at Chipotle before heading home. We enjoyed steak and potatoes for dinner.

6. Memorial Day–Than, Michelle, and Nathan joined us at our home to enjoy the holiday together! Than and Matt rode their bikes 10 miles to meet Michelle, the boys, and I at the park downtown. Unfortunately, Nathan didn’t have much room in the bike trailer next to Eli, so he and Michelle played in the park while the rest of us continued the bike ride another 5-6 miles! For dinner, we had deluxe burgers (minus my plain one, per preference) and delicious homemade raspberry ice cream with chocolate mix ins!

7. Current State: The doctor told us to add splenda “to taste” to Eli’s formula and then slowly wean him off. Well, neither Matt nor I were to keen on tasting his formula with splenda or without. But after he was still extremely resistant to the bottle after our camping attempt, we added more splenda…and guess who finally gobbled down his bottle? We thought that was the solution to all our problems until our little boy started screaming during feedings again. So currently, I would say he is resistant about 50 percent of the time to eating. We are still grateful that he is taking the bottle. He is still only taking 2-3 ounces at a time, but we are hoping that will increase. We are pretty sure that his small feedings are keeping him from sleeping longer stretches at night. The next step is to see the GI Specialist next Friday.

8. Pictures: I promise to post some soon! Thanks for your patience!

Right after I posted the entry about soy being the solution for Eli’s fussiness, he started refusing his bottle. I didn’t think much of it the first time, but it continued throughout the evening. I even tried GentleEase formula, which has a reduced amount of lactose. Though he tolerated it for about an ounce or so, he started refusing it, too. Unsure of what to do, I called the pediatrician’s office. The nurse said as long as he had wet diapers and wasn’t dehydrated, he could wait to be seen in the morning. I won’t lie; it was a very long night.

First thing in the morning, I called and got the first appointment available for him. To my delight, the pediatrician offered a lot of insight and recognized that something isn’t right. It appears that Eli has a cow’s milk protein allergy. The new solution: Nutramagen formula, which is a special formula for babies allergic to cow’s milk protein. The downside, of course, is that its expensive. The doctor thankfully gave us samples to see if Eli will tolerate it before we go out an buy it. In addition, we are going to start another medication for acid reflux to make sure that isn’t causing him additional grief. We also have an appointment with a pediatric GI specialist on Friday.

In the meantime, Eli and I are resting today…and hopefully Matt will get to rest this evening. Tomorrow Eli has his first physical therapy visit for torticollis. I’m hoping he’ll be feeling a little better by then.

We are really hoping to get some resolve from these issues quickly as we really, really want to bring Eli camping with several of our friends this weekend. These past few weeks have been difficult for us, and Matt and I really need some time away from home. And of course, Matt celebrates another year of life on Sunday (yea!!)…and I would love it if Eli was back to his happy ol‘ self again for his daddy’s special day! Thanks for your care and concern!

On Arbor Day weekend, a local nursery advertised a free tree in exchange for newspaper. Since Matt and I love free things, we scrounged up a bunch of newspaper (thanks Jamie and Rachel!), and ended up with the cute little silver maple tree in the picture (note the little tiny leaves on the twig)! And its about the same height as Eli…and what do you know, the same age! So with all the similarities, we had to get a picture as the tree and our little boy will be growing up together! We also bought a northern red oak tree that is probably about 25 feet tall that is planted on the other side of the yard. We are looking forward to the day when we have some shade in our backyard.

Many of you have been so encouraging over the past week. Thank you so much! As I’ve talked to some people individually, I realized that I really need to post an update to my previous blog post as Eli is doing much better!

Much to our delight, our little content boy is back. The solution: soy formula. After several worsening days of fussiness, we decided to pull out the sample can of soy formula tucked away in our cabinet and give it a try. Within 24 hours, Elijah transformed! No more waking up every 20 minutes from a nap and crying during feedings and after feedings and before feedings! He was down to only taking 2 ounces of formula at a time (and that was even a fight to get down at times), but now is back up to taking 3-4.5 ounces. And he’s relaxed with feedings again! I’ll admit, he’s sleeping a lot more than I would expect. Who knows, maybe he’s making up for not sleeping much last week or maybe he’s in yet another growth spurt! Matt had trouble with cow’s milk as a babe…so I think our little boy got his daddy’s genes in that area! But we are so thankful for the option of soy!!

Matt and I are very encouraged again. It sure seems like this whole feeding thing has been much harder than we expected, but it seems as though we must be over the hump now!! So that’s the update…we continue on with normal life (whatever that means)

On Tuesday, I brought Eli into pediatric rehab for a consult with a speech and occupational therapist due to his ongoing troubles with feeding. The therapists were very encouraging. One of the biggest problems we learned was Eli was having trouble sucking on the bottle we’ve been using. The Avent bottles are designed to be similar to breastfeeding. Since Eli is not able to breastfeed well, it only makes sense that he wouldn’t be able to suck on the Avent bottle well. They had me trial feeding him with a Dr. Brown bottle, and it was amazing to watch the difference in Eli as he ate. With the Avent feedings, his fists are clenched tight, his face is very intense, but with the Dr. Brown bottle, his fists opened up and his face relaxed. Also, with the Avent bottle, he was swallowing a lot of air. The Dr. Brown bottles are specially designed to decrease the amount of air a baby swallows. So Matt and I packed up all of our Avent bottles, and restocked our shelves with Dr. Brown bottles.

The therapists also talked a lot about how to help control Eli’s problems with reflux. The Dr. Brown bottles are supposed to help by reducing the amount of air he swallows when he eats. The therapists also showed me ways to hold him, burp him, change him, etc. to help prevent reflux. Eli has started taking less than normal in his feedings, and I also learned this is likely do to reflux. Its likely that he has had the problem with reflux for a while, and it has made him more timid to eat (one reason, he probably hasn’t developed a good suck). So one of our goals is to help make feeding times more pleasurable for him to encourage him to take full feedings. We also need to make sure he doesn’t binge eat (which increases reflux), or take lots of small feedings (which encourages binge eating). We are getting an education!

Another thing that was discovered is that Eli has a condition called congenital torticollis. Basically, it means he was born with a stiff neck. From what I’ve read, his neck muscles were likely damaged in-utero or during birth. His right neck muscle is stronger than his left; thus he tends to look right more than left. Since he sleeps on his back, the right side of the back of his head is flatter than the left (which is a common sign for diagnosis). Fortunately this was caught early enough in life that it can be fully treated with physical therapy. If caught later in life, he may have to have surgery related to asymmetric facial features. So in the meantime, Matt and I are working on encouraging Eli to look left. We are changing the direction he sleeps in the crib and are trying to provide stimulus on his left side to encourage him to turn his head left more often.

During the past week, Eli has been more fussy than usual. And we keep discovering more things that may be causing the fussiness. Is it reflux? or constipation? or torticollus? or frustration with feeding? or gas? or (fill in the blank). It seems like he is sleeping less during the night and fighting naps during the day. I keep being told a routine is essential, but Eli seems to fight all my attempts to create the routine everyone says he needs. I’m hoping its just a phase, and as we get some of the above issues resolved or more under control, we’ll get our content little baby back!

On a much more positive note, Eli has learned to roll over from his tummy to his back! yea! I was sorting laundry yesterday while he was having some tummy time (which is highly encouraged for torticollis)…and moments later when I looked over, he rolled himself over! And he repeated it several times later throughout the day (including a special showing for his daddy when he got home from work). I tried to catch it on video, but apparently, he’s not into performing for the public quite yet!

So that’s the inside scoop on our little boy! Your prayers are much appreciated as we’ve had some hard days and long nights lately!