Quick Update

Not much to update, everything is going about the same.. but I do have some good news to share! Landon had his last check-up with his pediatrician at the end of January, and then a week and a half later went up to see his colorectal surgeon in the beginning of February- as some may remember. He had not gained weight between the appointments and so I was beginning to get concerned. On Tuesday, I took him to get the rest of his 6 month shots (he's still running behind from not being able to receive vacinations while he was so sick the first few months of life) and he has gained a whole pound in less than 3 weeks! Other than that, not much is new, so I thought I would add some new photos.

Maintenance

Well, the plan we made at our follow-up in Cincinnati was short-lived. As I mentioned before, we discontinued the Flagyl and dropped to 2 irrigations a day. By Monday, just 3 days later, Landon seemed off- excessively fussy and slightly poorer appetite- and so I began watching him closely. Then on Tuesday morning he refused to eat altogether and projective vomited at about 6 in the morning. Fortunately I kept what was left of his Flagyl and so I was able to get him back on it right away. I called Cincinnati and spoke with his nurse and she confirmed that I had done the right thing in starting him back on the Flagyl, and she recommended we do 4 irrigations a day until symptoms disappear and then go back up to 3 a day. She later called back and instructed us to fill a prescription for 25 mg of Flagyl per dose (his regular dose is 37.5 mg) and said that Dr. Levitt wanted us to continue the lower dose as a maintenance medication for the next 3 months.

In a way, I'm relieved that we don't have to worry about Landon getting sick again for a while. He will be 10.5 months old by the time we discontinue the maintenance meds. He will be much bigger and stronger, plus that will be more time that he has been on donated breast milk gaining antibodies which are making his immune system stronger. The downside is that I really hate him having to take Flagyl. Studies done on the safety of it have shown that it is carcinogenic in both mice and rats. It has been shown not to be carcinogenic in hamsters, which is good, but who knows which rodent reacted more closely to how a human baby would. Plus there are risks with long-term use of any antibiotic, such as developing c.difficile (c.diff) or creating resistant strains of bacteria. So hopefully he can successfully go off the Flagyl in May when we try again. I have done some more research and have decided to start Landon on grapefruit seed extract, to see if that will help. I also want to discuss trying sodium cromoglycate. There was a study done in Finland in 2001 on using sodium cromoglycate to aid with management of recurrent and chronic enterocolitis. Even though the sample size was small, only 5 participants, 3 of them responded favorably, and so it might be worth a try.

Last week we finished all 3 evaluations for Early Intervention. The physical therapist came first, which was the therapist I was the most interested in seeing since Landon's delays are mostly gross motor. She agreed that he has hypotonia, and classified it as being a moderate degree. When you pull him up from laying on his back he has what is known as "head lag" which means that he isn't strong enough to lift his head up with his body. His joints are also hypermobile, which means that they flex more than they should because he lacks the strength to form resistance. She showed me several exercises to do with him to help him make progress towards what he should be doing. She also explained that because of the hypotonia, when he attempts to make progress towards any gross motor milestone he is at a lower starting point than a typical baby. He has to work much harder at everything, which will result in greater fatigue. He also will need more time to meet his milestones, and so he probably won't crawl or walk on time. But she reassured us that when 5 year olds are playing on the playground they aren't going around comparing the age at which they walked, and so Landon will be fine long-term, he just may not be a star athlete.

The occupational therapist came next, and she was impressed with Landon's abilities. He is functioning pretty close to age appropriately with regard to his fine motor skills. The developmental therapist also thought that he looked good, with the exception of his gross motor skills. We are meeting on Thursday to discuss what the plan will be. Landon will either go ahead and start physical therapy, or the physical therapist will come back to re-evaluate him in 2 months. He was slightly below the criteria of a 30% delay, but the physical therapist was confident that in 2 months when there are more milestones to hit, that he will miss them and then meet the criteria. Either way we have exercises to do at home for the time-being, which is what I was hoping for. So here's to hoping for an uneventful few months full of lots of progress with Landon's gross motor skills!

Finding a balance

Thursday night we headed back to Cincinnati for Landon's follow-up with Dr. Levitt Friday morning. Just like last time, we went in and did an x-ray first, and then went up to discuss what it showed and what has changed since our last visit. The x-ray looked much better than his last. His small intestines are no longer dilated and there were no signs of enterocolitis. Dr. Levitt also did a rectal examination and Landon's sphincter is much better as well, which means that the dilations were successful.

We are continuing the dilations at least twice a day for maintenance, but also can do them as needed to help stimulate the area to move things along. We stopped the Flagyl all at once, but left with a presciption for half the dose just in case he doesn't tolerate the change. Dr. Levitt also set up a plan for tapering off the irrigations. He felt that the reason that Landon is not going on his own is because we are keeping him flushed out so often. The irrigations empty him out, and when we are doing it 3 times a day he isn't getting the chance to accumulate enough stool to feel the urge to push. The only problem with that is that Landon is still extremely prone to enterocolitis, and if things sit around for too long he gets an infection. So we have to find a balance between letting things accumulate enough that he learns to use those muscles and push, but not letting things sit around long enough to cause an infection. Dr. Levitt had us drop an irrigation, and so we are already down to two a day and will continue this for two weeks. At that point we will go down to once a day, and continue that for two weeks as well. If that goes well, then we will try to stop irrigating altogether. If at any point he starts showing signs of enterocolitis then we have to go back up to 3 irrigations a day, and then start the process of tapering off again. So we will see how that goes.

Landon is still doing well with starting solids. He has done so well that we have been able to introduce a new food every 3 or 4 days. So far all of the foods we have tried have been a success. Like I mentioned before, we only do foods from the Cincinnati "Laxative Diet" list. I make all of Landon's food which is a new adventure for me. Two of the most common culprits for causing constipation- bananas and apples- are in just about every baby food on the market. Every single combination food that I can find contains one or the other. Fruit and vegetable skins are also known to cause problems, and so when I make his food I'm able to strain everything and know that it does not contain skins. Those were the main reasons that I decided to make his food, so that he could eat a variety of foods and not be as limited by his diet restrictions. So far everything is going well with that, and I have a feeling it will get easier with time.

This afternoon Landon is having his first evaluation with Early Intervention. The physical therapist will be coming to our house to see what she thinks. On Thursday the developmental therapist will be coming, and we are still waiting on the occupational therapist to contact us, which I would imagine will be sometime this week. Landon has actually made a lot of progress over the past week with sitting up unsupported. He is sitting up without propping with his hands and holding it for 5-10 seconds, sometimes longer. He also does well sitting in his high chair at the table, but he isn't strong enough to eat in that position- he leans forward too much and food spills out of his mouth. I have to sit him in either his car seat or bouncer in order to feed him, which works at home, but it is yet another obstacle which keeps us from being able to leave the house often or for long periods of time.

Well, lunch is over for me. I will update soon on how the EI evaluations go. I hope everyone has a great week!

A little bit of everything

If you made it over here, then I see that you found that I moved Landon's Caring Bridge. Since we only have the internet on my phone, this makes it easier for me to update more often since Blogspot offers a mobile template. Also, I like the comment feature on the posts in case there is anything anyone would like to share.

Landon is doing okay lately, not really good or bad either one. He is still eating better, and probably gaining weight and so that part is good. We have introduced two different solids so far. Even though we will only be using foods selected from Cincinnati's 'Laxative Diet' list, I was still paranoid about food causing constipation. For that reason, we started with prunes. They may have had a little bit too much of a laxative effect, as they ran through him in less than 2 hours. I know that is good that he was able to pass them on his own, but I'm unsure if he was able to gain any nutrition or calories in that short of a transit period. Next was green beans, and last night was the first time that he tried them. He had an inconsolable period of crying from 9-10 last night, but that is something that happens from time to time anyway and so it is too soon to tell if it was from the food. I just fed him green beans again about 30 minutes ago and so by tonight I will have an answer.

Earlier this afternoon I met with the service coordinator from Early Intervention. We were assigned therapists for developmental, occupational, and physical therapy that will be contacting me to come seperately to evaluate Landon. If he exhibits a 30% or more delay in two areas then he will be eligible to receive therapy in our home for only $30 a month. If he doesn't qualify, then I will use his prescription for OT and PT and get him therapy privately, but that means more time off work to get him there and it will probably be much more expensive.

On Thursday night we are leaving to go back up to Cincinnati for another follow-up. They are doing a repeat abdominal x-ray and discussing what has happened since our last visit. We will be discontinuing the antibiotic that Landon has been taking for the last month, but I'm not sure if we will be stopping right away or doing it gradually. I also want to discuss why Landon is having so many issues with the affected portion of his intestines removed. It is normal to have some issues post-op, but not this many and to this extent. When he still had his ostomy he also struggled with enterocolitis, which is very rare. So I feel like there is something more going on. I have been doing a lot of research on chronic/recurrent enterocolitis and the outcomes. I found an old post from several years back from a parent that said that her daughter struggled with issues like that for 5 years before they discovered she had damaged connections from her small to large intestines. That got me thinking about an incidental finding in Landon's upper and lower GI studies done in July. We discovered that he had a mobile cecum. It isn't exactly rare, approximately 15% of us have a mobile cecum and have no idea. It isn't known to cause problems in the general population, but who knows if it causes problems when it exists along with Hirschsprung's. If anyone knows, it would be Dr. Levitt and so I plan on bringing it up. I'll try to update this weekend on what we find out in Cincinnati.

Big Day of Appointments

Today I'm home from work with a nasty stomach bug. Fortunately my mom is still watching Landon for me and my step-dad drove Carson and Austin to daycare and so I'm able to stay in solitary confinement to avoid passing this to everyone in the house. I've been out of sick days since December and so it is another unpaid day off, but at least it gives me a chance to update on what all happened yesterday in a timely manner.

First, Landon saw his pediatrician yesterday morning for his 7 month checkup. He is up to 20.5 lbs and 28.5 inches. Not surprisingly, with all of the issues we have had since his surgery he has dropped from the 90th percentile for weight down to the 70th. The good news is that his length has only dropped to the 88th percentile, down from 90th as well, and so he is still growing well despite the setbacks.

Next, we had to address Landon's development. I knew that he was starting to fall behind as he had recently missed all of his 6 month milestones. Already knowing that didn't make it much easier to hear though. When the nurse comes in she evaluates Landon using the scale for typical babies. Preemies have an adjusted scale, as do children with certain conditions such as Down syndrome, but there is no adjusted scale for babies that survived 35 minutes of cardiac arrest and have undergone many hours of general anesthesia and two major surgeries. Landon is still expected to fall on the "typically" developing scale. I had to answer "no" to all of the questions regarding his development.

Having had two other children go through well-baby checks, I can already tell that our pediatrician treats Landon differently. In addition to just looking him over, checking ears, throat, genitals, etc. he also does a much more thorough physical examination. He checks all of Landon's reflexes, puts him into different positions to check his strength, and does several tasks to see firsthand how he is doing. He was concerned with Landon's tone. He said that he is very "floppy" and said that he is going to have to add "developmental delay" and "hypotonia" to Landon's chart. Developmental delay is self explanatory, and I was expecting that, but the hypotonia caught me by surprise. Having worked with the populations that I have, the first thing that came to mind when I heard "hypotonia" is cerebral palsy. It means low muscle tone, and can be synonymous for cerebral palsy. Fortunately we were already heading to St. Louis for our afternoon appointment with neurology, which couldn't have been better timing.

After the unsettling checkup in the morning, the neurology appointment was very reassuring. The neurologist was much less concerned than our pediatrician. She said that he only has mild hypotonia in his extremities, but it is more severe in his trunk. She was encouraged by how alert and social he is. Landon successfully completed several tests with blocks. He struggled with passing them from hand to hand and lifting his arms above his shoulders. He also struggled with sitting up on his own, but for short periods of time he can balance hunched over and he is able to reach and pick up objects while doing so.

Overall, she said that Landon is functioning at a 5 month old level. She wasn't very concerned with his tone, she said that after what he has been through it would be much more concerning if he was hypertonic. She felt that it is likely a combination of everything- long hospital stays, 8+ hours of general anesthesia at a young age, being critically ill when he was a week old- that are causing his delays. Everything she said made sense. If most of his issues are in his trunk, that explains why he was keeping up with his milestones until recently. Sitting up was the first milestone that he missed, and so that goes right along with what she said.

So the next step- what do we do about it. A 2 month delay isn't exactly devastating, especially considering what Landon has been through. After all, this is the child that another member of the neurology team once called "Superman" because he could move his extremities and had his newborn reflexes back- even before they saw a perfect MRI. Just like our other boys, all I want for Landon is to be the best that he can be. So we are going to start physical and occupational therapy. I have contacted early intervention and we are meeting on Tuesday to go over financial and insurance information, and then soon after Landon will be evaluated. If he exhibits a 30% or more delay, he qualifies for services and they will come to our home to work with him. If he doesn't qualify, I have a prescription for OT and PT which I can use to get him therapy privately. The only reason that would not be ideal is due to the fact that we live in the middle of nowhere. The closest place that sees babies is 40 minutes away, and so that would be complicated with my work schedule. But we will do what we have to do. In July we will return to see his neurologist and re-evaluate how he is doing.

Last but not least, is the best part of going back to St. Louis. We were able to see the doctors/nurses/physician assistants/etc. that saved Landon's life. I had written and told them we were coming, with every intention of getting there at least half an hour early to go up and visit. But at the last minute John decided to go in to work, since his sick time is not exactly plentiful right now either, and so we were really rushed to get there by 4:30. We signed in in the waiting room at 4:30 exactly, and before I even sat down one of the doctors taking care of him the night that he coded on the floor was in the waiting room looking for us! I am thoroughly convinced that one of the main reasons that Landon survived was because he had so many people taking care of him that truly cared for him. CPR is very rarely successful after as long of a duration as Landon received it, but they didn't give up. And because they made the split second decision not to give up- even knowing how poor the prognosis surely was- Landon is still here having a wonderful life and making us so proud. Even though I send pictures every few months, it was great to be able to visit. Landon smiled and laughed at everyone. We went up to the 8th floor and saw many people that had been there "that night"- as it is referred to. Although we come to St. Louis often to take the boys for fun days, it is always on the weekend when many of them are off work. The best part of continuing to go in for neurology appointments during the week will be to visit! Since we will be going back in July after Landon's first birthday, we are going to work so hard so that maybe he will be able to walk in and actually say "hi." If early intervention asks what our goal for Landon is- that is it. For him to be able to walk in and greet everyone that saved his life, and to eventually be able to tell them "thank you."

Couldn't wait to share!

I know I usually go weeks without updates, but I couldn't wait to share. Since starting the donor milk at 5:00 am yesterday morning Landon started stooling on his own. My mom texted me a picture of a poopy diaper while I was at work, I'm sure my co-workers think I'm about the strangest person to ever live, but it was such a wonderful sight to see! His belly is the most flat it has ever been in his life. Even when I've thought that it looked good in the past he must have been distended becasue it has never looked this good.

Landon is so much happier and more alert. Struggling to digest his food must have been taking an even bigger toll than I realized. He hadn't rolled over since early December and he rolled 4 times last night. He also did a better job of sitting unsupported- although he is already 6.5 months old he is not yet sitting up on his own. When we did the irrigations yesterday there was hardly any stool that came out at all, he had passed it throughout the day. I know this is gross, but just to paint you a picture, on formula- picture cheese sauce mixed with cottage cheese. On breastmilk- picture water with yellow food coloring with a few tiny flecks.

This is a short update, but I had to share. Once again I'm on my lunch at work and I'm out of time. I hope everyone has a great rest of the week.

Repeating the same experiment over and over and expecting different results is the definition of insanity

Things haven't been great lately. In my last post when I said that the vomitting had resolved, I was wrong. He continued to vomit every 2 or 3 days. His appetite also went way down. Immediately following his surgery he had a huge appetite and ate 36+ ounces of formula a day for about a week. I was excited because he gained back all of the weight he had lost, but since then he has only been eating around 15-20 ounces a day. He was gradually losing weight instead of gaining and about a week before our follow-up appointment he started being unable to pass stool or gas on his own. We were irrigating him 4x per day and that wasn't even enough.

On the 11th we went back up to Cincinnati for his follow-up with Dr. Levitt. One look at his abdominal x-ray and he was sure that Landon had enterocolitis. This was very upsetting because we hadn't had an episode since we started going to Cincinnati when he was 2 months old. So now we're doing a month of antibiotics and continuing the frequent irrigations. On top of all that, Landon was also really tight where they reattached his remaining large intestine to his rectum and so we have to dilate. The smallest rod is the size of a sharpie marker, the largest one is the size of a magic marker. We have to insert them for one minute twice per day. He hates it and screams in pain. It takes one person to hold him still and another person has to do it. It's horrible, but it's what we have to do so there aren't any other options.

It is really bothering me that he has enterocolitis again. Since his first episode where we nearly lost him we have always been able to keep it under control when he gets it, but he had gone so long without getting it I thought maybe we were done. And we had been irrigating him several times a day which should have prevented it, so now I'm worried that we no longer are able to keep it under control. We go back for another follow-up on February 8th. He will still be on antibiotics so we expect to find out that the infection is gone, but hopefully it doesn't return.

Either way, once again I feel like we have lost a lot of control. We did all we could and we weren't able to manage it. It is definitely time for a change. I ditched the Culturelle and started Landon on a much stronger probiotic, VSL 3. As far as the poor appetite and weight loss go, there wasn't a lot that we could do. What makes babies gain weight? Fat and increased calories.. which are also constipating. You can't get a child constipated that is already battling dangerous intestinal infections. The stool gives the bacteria even more places to grow and take over. So it's risky to attempt to change formulas, and it might not even help. All I could do is beat myself up over not being able to breastfeed. While we were still in Carbondale I had two lactation consultants helping me with no success, they saw me pump for 30 minutes with nothing to show. The last thing I was told before we left was that due to my blood loss during the c-section (they had to give me 2 units) that my body just might be working on other things. On the 6th day of Landon's life when he went into cardiac arrest in my arms for such a long duration I quit pumping. Who knows what would have happened if I would have kept at it. Once he recovered, he did well on formula with his colostomy and so it wasn't incredibly urgent situation. I knew that breast milk would help him and so I tried the Yaz-Doperidone protocol to re-lactate for 2 months with no success. Once again, I was disappointed, but not a life or death situation because he did well on formula with the colostomy.

Unfortunately, since the pull-thru, his tummy just can't handle it. What options did I have, spend hundreds of dollars on the meds to try the protocol again which would probably have no success, or spend $5 an ounce to buy milk from the milk bank, knowing I could only afford to feed him about 4 ounces a day- and that is with cutting back on some major expenses. After battling with my pride I finally reached out and asked for help on my Facebook page. The response was overwhelming.. it has brought me to tears on several occasions. Enough wonderful ladies have already donated enough to give Landon 16 ounces a day for the next month. Many have commited to pumping the best they can to try to keep giving me more. If I can get 4 people with 4 ounces a day to spare I can continue giving Landon at least half breastmilk. Production can be inconsistent and you never know what is going to happen in life, but I think I've found enough. God bless all of those wonderful people. I know this is going to make such a big different for Landon. This could very well be the key to helping Landon become strong enough to finally kick enterocolitis for good. At the very least, it will be easier to digest and will give his poor intestines a break. It is amazing what people are willing to do to help others. I've given many of our donors a brief description of what happened with Landon and what issues he faces, but they really have no idea how great it is what they are doing for him. For our whole family! It has been incredibly stressful watching him get sick over and over and wondering if there was something I could have done differently to make this stop happening. This could very well be it. Thank you so much if any of you are reading this. There are no words to express my gratitude.
I'm at work right now and my lunch is over, but I will update in a few days. This is day 4 with no vomit, so keep your fingers crossed! I hope things will finally get better. As always, please keep Landon in your prayers.