When I wrote the posts about Mayo last week I was mostly trying to keep family and friends updated about the specifics of Clark’s appointments. I tried to stick to the basics of what happened without including a bunch of emotional, knee jerk reactions. Now that we have been home for a few days I have had a little more time to process how last week went, so here comes the emotional reaction.

Since Clark was born he has had a developmental pattern that goes a little something like this: (a) he seems pretty normal and on track (b) he slowly starts to fall behind (c) I begin to become pretty concerned as his development falls way behind (d) overnight he has a huge developmental leap putting him back in the more “average” range (e) Repeat. Because of his low muscle tone I think this may just be how it goes for him, which I am starting to come to terms with. At the same time, I don’t want to ignore any difficulties he is having for too long in case he does need additional help.

Going into the week at Mayo I was very anxious. I was concerned that Clark may have some muscle syndrome that would adversely affect him for life or that there was neurological issues that would result in learning difficulties. Although I want to figure out his eating issues, and do want to help him with anything that may be causing this issue, there is a difference between just thinking something is wrong and knowing for sure that something is wrong. Like most parents, I want the best for my children and kids have enough challenges to face without additional medical issues thrown in.

The week we were at Mayo Clark had one of his big developmental leaps. Suddenly, he no longer was leaking formula from his bottle while he drank, indicating that he has a stronger suck. He has been able to walk along furniture for quite some time, but if you held his hands and tried to help him walk forward he would not or could not (he does not lift his leg in a stepping motion while walking along furniture but shuffles along instead), but he was able to do that while we were at Mayo. He started doing squats while holding onto furniture, and he started crawling quickly as well (he has been able to crawl since November, but is very slow). All of these things bring him back up into what I would consider the range of “average”. I am excited that he is doing so well. At the same time, since he was at Mayo at the top of one of his developmental cycles, other than his eating, there was little that was concerning.

Over the last year I have second guessed myself many times. Am I imagining his difficulties? Is he perfectly normal but my postpartum depression was causing me to imagine that he had difficulties? When he turned one and could not eat solids, I felt like that was confirmation that the hellish year we had been through had not just been a figment of my imagination. Although I am really thankful that going to Mayo eliminated a lot of my more serious fears, I feel very frustrated that there was no solution to his eating issue. Do I think that his inability to eat is caused by something? Yes. Do I want to know what that something is? Yes. But I would rather be in the dark about the cause of his eating issue if we could at least find a way for him to eat. I feel like it was yet another doctor (or in this case, lots of doctors) telling us that he is “fine”. Yes that is over simplifying it a bit, and there does seem to be an issue with his thyroid, but the ultimate conclusion seemed to be that he was fine.

Perhaps the most frustrating part of the week was when we met with the occupational therapist. She had already made up her mind that the reason he is not eating like he should was because he has an aversion to textures. After doing the upper GI test, which confirmed that he can swallow normally, she ran through some basic things on how to get him to eat. I was tired by this point and probably overly emotional, but I wanted to shake her and scream “This is my third kid! I know how to progress normally from pureed foods! I know to put him at the table with us! This is not my first rodeo!”. She told us we would have to really encourage him to put new things in his mouth – Clark puts anything in his mouth. A day or two later we were sitting at the counter with him while Smith had Lucky Charms and there was a stray piece of cereal on the counter and he snatched it up and quickly stuck it in his mouth. Putting food in his mouth is not the issue.

The occupational therapist was not a total bust. She did note that he is not moving his tongue to the left side. Up until that week he had not been moving it side to side at all, which had actually been pointed out to me by the county therapist who we had met with the previous week. The occupational therapist was able to get him to move his tongue to the right but he will not move it to the left. So we know what to work on with him at least. I do believe his eating issues to be in his mouth, and more specifically, in his tongue. What to do about that is what is frustrating. Although they recommended that we see a speech pathologist they told us that at his age there is not that much that they will be able to help him with.

In our final appointment with the GI specialist she told us that he is currently getting adequate nutrition, that we could mix his formula stronger to get him additional calories, and that we could expect that he will still be on formula when we follow up with the neurologist in two months. We will test his thyroid next week but I am not expecting anything to really come of that.

Since we returned home Clark has been eating really well. Yesterday he ate more than his usual pureed food at supper, slept through the night, and took 8 ounces of formula this morning which is the first time he has ever taken more than 6 ounces. I think this is due to the increased strength in his suck. I am encouraged by this and I believe this is an answer to prayer. So thank you to everyone who has been praying for Clark. I am hopeful that with increased food intake Clark’s muscle weakness will become less apparent as well.

Clark is a funny little boy who is showing more and more personality every day. He loves to babble, play with his brother, and play catch with us. I am thankful for him and the progress he has made, we know he is getting adequate nutrition, and I am tired of trying to figure out his issues. I don’t regret going to Mayo. I feel like we have done what we could to find a solution and there just is not a solution at this time. That is really discouraging to me and honestly leaves me feeling rather hopeless but we will continue doing what we have been doing and hope that the next round of developmental changes will bring about the ability to eat like a normal one year old.