So today I had to take the boys into the Peds to get their immunizations. I chose NOT to tell Tanner ahead of time why we were going and he assumed that it was for Ty (because it is always for Ty – figured he would guess that). Anyhow, Ty’s shot was first and he didn’t even bat a beautiful eye lash over it. Tanner had to get FIVE – yikes – including the MMR which is painful. He was screaming! (And to Jim….I think you are a real loser for making me brave this alone:). I was laughing so hard tears were approaching. Sounds harsh but if you could have seen what I saw you wouldn’t judge. So Tanner is screaming his head off and Ty gets big eyes and then he starts crying. He was fine with his shot but he figured if Tanner was crying than there must be some reason and he better be afraid too. Then he got mad. He looked at the nurse and started spitting at her. That’s when I busted up. I should have been telling my 2 year old that spitting was VERY unkind but to see Ty THAT angry that someone was hurting his brother was just down right precious. The nurse was giggling too thankfully.

Tanner however is still milking this. In fact, he was upset that the band aid was wrinkled and wouldn’t let me touch. This reminded Ty that he had a band aid too and so he reaches down, rips off his band aid and then hands it to me saying “All done”. :). Very funny to have two polar opposite children.

Now I am going to sigh…… You expected it was coming I am sure. This month has been full of my sighs it seems and today was no better. The Peds appointment was discouraging today. Let me go back a couple of days and recap the week first.

Monday – Ty’s Eye Appointment

Good news first! The Dr. acknowledged that Ty’s left eye is not tracking properly but he said that:

(a) We can’t expect perfection. We are never going to get it.

(b) If he operates a third time we will be at risk of making this worse.

(c) Ty’s eyes are not staying crossed and though he has trouble tracking, they are staying in one position. Therefore, he IS using his left eye, he just has to turn his head a lot to use it instead of turning the eye. This means that he is at more minimal risk of losing site in the left eye.

(d) His eyesight is not bad in and of itself.

(e) Glasses and patching wouldn’t be worth it right now.

He still may have CVI in his lower field but even if that is the case, it isn’t correctable. Basically we are at a “live with it” point. So we sit on this for three more months and then check again.

Today’s OT appointment

Ty’s OT has begun to incorporate feeding therapy with his OT since he still can’t use a fork or spoon. (Story about that first: I felt like such a jerk this week. On Jim’s birthday I went to cold stone and brought back ice cream. Ty was in his high chair and asked for a spoon. I gave him the watermelon sorbet and the spoon to let him give it a try and then got caught up in a conversation with my mother in law and forgot to help Ty. He was being very quiet so he didn’t draw my attention. After a bit he starts pulling on my shirt. I look at him and he is covered in watermelon sorbet. He hands me the spoon and asks for help. I felt so terrible. He had wasted over half the sorbet trying so hard to get it in his mouth and he hadn’t asked for help and I had forgotten to feed it to him. I hate those moments as a parent when you feel like such a jerk.)

Anyhow, Ty’s OT tried to give Ty a tiny bit of water out of an open cup today and sure enough he started aspirating right away. She insisted that I start using Simply Thick in all his liquids right away. (I was told this a year ago too and just hadn’t done it. My reason? I don’t give him drinks in an open cup and he regulates fine with a sippy cup).

So we go to the Peds and I tell his Dr. that the EEG was normal but now I have another problem. I explain about the choking last week, the aspiration and the raised eyebrows when he swallows and the Dr. ordered another swallow study (of course). THEN he say’s to me….wait… I have to type out our conversation for you…

Dr.: Ty is choking some but not aspirating right?

Doni: Wrong. He aspirates all the time IF you give him an open cup which I rarely do.

Dr: If he aspirates though and will have choking incidences like these, this is serious. If the swallow study shows he is aspirating how are you going to feel about a conversation on a fundo?

Doni: WWWWWHHHHAAAAATTTTTT????? You gotta be kidding me! Ty does NOT need a fundo!

Dr: If he is aspirating that is dangerous and that may be the best course we have.

Doni: Well first of all, when he aspirates he coughs it up so what’s the big deal?

Dr: I agree that he hasn’t been getting pneumonia and it’s good that he is coughing it up BUT still aspiration like this can cause long term lung damage.

Doni: Okay but I am controlling his environment. NO more popcycles. Sippy cups or straws only. I’ll start using Simply Thick It. If I control the behavior that should be enough right?

Dr: Behavior modification MIGHT take care of it. Let’s just see what is actually going on to cause this.

My heart totally sank with this news. Just to even hear the word “fundo” mentioned to me was shocking. I do NOT think Ty needs this….bbbbuuuuttt….last week was so scary. There is a part of me that is now wondering…what if there IS some reason why Ty tends to choke and aspirate that can’t be fixed and they tell me “True it is infrequent but this can also be life threatening”….what decision would we make? Man….can you even imagine choosing to feed your child through a tube in their stomach and deny them food orally forever? Can you even imagine that?????? I can’t. This is too big for me to even contemplate. I feel kinda speechless about this right now.

As if THAT wasn’t enough….

So the Dr. is checking Ty and asking how everything else is going and I tell him that we still have gross and fine motor skill issues we are working with. I told him that I suspect there is potential for mild CP due to his balance and tight feet and possibly the tightening of his hands from overflow issues. I take Ty’s shoes off and tell him “See for yourself. Check his feet.” Next thing I know the Dr. is pushing on Ty’s feet with all his might. He was practically shaking and his face was contorted he was pushing that hard. All the while he is saying “WHOA!!! THOSE ARE TIIIIIGGGGHHHT”. And by the way, Ty is not even grimacing. He is looking around like nothing happened. I then ask the Dr. “How on earth could you push his feet that hard and he doesn’t even noticed?” He said “Because they are THAT tight! We gotta do something about this. These feet have to be stretched. We’re going to have to brace him.”

See why I am sighing? Sheeesh.

Since I already have an appointment at the end of Sept with an ortho, that would have been the peds next step. I explained that if Ty does have CP, I want an official diagnosis because of applying for long term care before he is three. The Ped totally understood and thinks Ty will get long term but I am not convinced. I could tell the Ped is very suspicious of possible CP too by the things he said but I am sure he wants the Ortho or the Neurologist to make the official diagnosis (IF that diagnosis is to be made).

I remember reading stuff on heel chord issues with preemies too though and I wonder if this factors in. Many preemies have to have their heel chords surgically stretched because they don’t grow right. I’ll have to read up on that. Possibility though I don’t know much about it.

Ty’s nuero and ortho appointment are Sept/Oct so it will be awhile before there is any further movement on the potential CP issue/braces/motor issues. The swallow study will probably be in that timeframe too. Does it ever end?????????

Also Ty has dropped down to the 50% percentile for height and 45th% for weight. This is surprising because he looks so tall to me. This would normally be the good news because it’s average and this is based on his actual age which he is 4 months behind so no concern there – HOWEVER he hasn’t gained weight in a year and his eating habits are consistently declining so I hope this is not a downward trend.

Let’s end this diatribe on a funny.

This morning I asked Ty what he wanted for breakfast. He walked over to the pantry, pulled the peanut butter out of the cabinet, handed it to me and said “Put a sandwich on it”. 🙂

****Okay help! I am confused. I know the Dr. was talking about a G-tube for Ty. Feeding Ty through the stomach so that we aren’t taking the risk of aspiration but he also said Fundo. I was thinking fundo was another name for G-tube but I think fundo is short for Fundoplication which is a surgery that prevents the refluxing issues. Why would he say that? Is there something else “fundo” ish that is G-tube related? So what was the Ped talking about? Fundoplication and G-tube? G-tube only and I got confused. Fundo only? I don’t know why a fundo would stop the problem because it has nothing to do with aspiration….. Hmmmmm…. Anyone have any ideas? I am trying to recall exactly what he said and I know he said fundo but the context of our conversation was not feeing him orally which has nothing to do with a fundo. I am totally confused now.

Note to Heidi – this is conversation worthy so I will be calling about this if you happen to read it first.